Informal Carers Research Project Report (3rd Draft, July 2000)

Front Cover

Crest – SEHB, W.I.T., and U.U.

The Health and Social Care Needs of Informal Carers

of Older People:

An Exploratory Study

September 2000

Paula Lane, Research Officer, South Eastern Health Board / Waterford Institute of Technology;

Professor H.P. McKenna, Head of School of Health Sciences, University of Ulster;

Mrs Assumpta Ryan, Lecturer in Nursing, University of Ulster;

Mr Paul Fleming, Lecturer in Health Promotion, University of Ulster.

ACKNOWLEDGEMENTS

The contributions of several people must be acknowledged as central to this research study.

Our deepest thanks are extended to all the carers who consented to partake in the study.

Our appreciation is also conveyed to The Carer’s Association and The Alzheimer’s Disease

Society for their co-operation and support in the project.

Many thanks to Ms. Louise Griffin for her administrative support, patience and good will during

the project.

We are indebted to Mr.Tom Moffat, Minister for State at the Department of Health and Children

who commissioned and funded the project.

Sincere thanks to Mr. J. Magner, Regional Manager at the South Eastern Health Board; who was

instrumental in initiating the project.

We are most grateful to all the public health and community psychiatric nurses whose

participation in the various data collection methods is sincerely appreciated.

Members of the Research Steering Group

Mrs. E. Carroll, Superintendent Public Health Nurse, Waterford Community Care Centre,

Mrs. H. Daniels, Director of Nursing, Waterford Regional Hospital;

Mr. Tony Gyves, Hospital Manager, St. Otterans’ Psychiatric Hospital, Waterford;

Mr. J. Magner, Regional Manager, South Eastern Health Board;

Dr. V. Martin, Head of Research and Development, Waterford Institute of Technology;

Academic Advisory Team

Prof. H. P. McKenna, Head of School of Health Sciences; University of Ulster,

Ms. A. Ryan, Lecturer in Nursing; University of Ulster;

Mr. P. Fleming, Lecturer in Health Promotion; University of Ulster;

Mr. B Cunningham, Statistical Advisor; University of Ulster.

ii

EXECUTIVE SUMMARYIn 1999, the theme of the International Year of Older Persons was “Towards A Society For All

Ages”. This theme fostered the concepts of inclusiveness and human unity, in opening up channels

of multigenerational communication amidst a society where older people and their carers sometimes

experience marginalisation. The designation of 1999 as the United Nations International Year of

Older Persons has raised the profile of issues in relation to these population groups. Despite a

significant growth in the academic literature on care-giving and carers’ needs in the past decade,

many gaps remains at empirical, rational, and conceptual levels (George, 1994; Kellett and

Mannion, 1999). Indeed, a clear understanding of the pertinent issues remains elusive (Gubrium,

1995). In Ireland, there is a dearth of empirical evidence regarding carers’ subjectively percei3ved

needs and experiences. Ruddle et al (1997) highlight the lack of available data in many areas of the

care of older persons, suggesting that a database to underpin policy and practice,

“…must be established through research on assessment of needs, exploratory research on possible services and solutions to address needs and problems and evaluation research on the services provided" (p.324).

Advancing Healthcare Research Initiatives

Recent fundamental changes in health care policy and provision in the U.K. (D.O.H; 1993) and

Ireland (D.O.H; 1994) have emphasised the need for a research culture within the health services.

The argument underpinning this revolves around the assumption that increasing the evidence base

of practice may have a significant impact on the quality of care and consequently quality of life.

Implicit within this cultural change, is the challenge to demonstrate more evidence based effective

and efficient health and social care strategies to meet stakeholder requirements, and to do so in a

flexible responsive manner. As a result, health service providers are becoming more research aware

and more research active.

The South Eastern Health Board in association with Waterford Institute of Technology and The

University of Ulster launched this research study in March 1999. Its aim was to assess perceived

health and social care needs of informal carers of older people. The Board commissioned the project

on the basis that it was both pertinent and timely to explore these issues in an attempt to promote the

basic human rights of older people and their carers, based on independence, participation, self-

fulfilment, care and dignity. The rationale prompting the study stemmed from drives within the

South Eastern Health Board to inform future service plans, with the ultimate aim of using those

inputs and service provision strategies shown to produce effective and efficient outcomes. This

iii

report was written to provide an evidence base for those involved in policy development,

commissioning, planning and operationalising services in support of the carers of older people in

home care settings.

THEMES FROM THE LITERATURE

On analysis of the extant literature, it was found that while some studies have explored carers’

needs, there is a dearth of consultative research exploring carers' subjectively perceived health and

social care needs; particularly in Ireland. Many gaps remain in the evidence base pertaining to

conceptual, rational and humanitarian aspects of care-giving. Specifically, the following points

summarise the main themes identified:

Significant weaknesses were identified in relation to the nature of health and social care services

as well as the planning, organisation and delivery of such services;

Contemporary approaches to determining carers’ needs and experiences are unsystematic, lack

monitoring and evaluation and are predominantly normatively derived without structured

consultation with carers themselves;

The importance of developing flexible, responsive approaches to addressing carers’ needs in

a proactive way, particularly regarding support services is emphasised throughout the

literature;

There is a need for greater flexibility and scope in the way multidisciplinary community care

teams function in order to invoke more effective and efficient care interventions. In this regard,

health promotion and health protection initiatives are central to maintaining and improving

carers’ health and well being, as well as that of the care recipient;

Benefits should be constructed around positive experiences of care-giving, facilitated by

cohesive systems of care and embracing opportunities for services such as respite care, socio-

economic and emotional supports as well as practical assistance;

The segmented, haphazard nature of some areas of service provision reinforce the value of a

thorough exploration and evaluation of current and future service plans in relation to carers’

needs. These needs transcend health and social care boundaries as well as areas such as

education, housing and environmental health;

Measures to enhance communication and collaboration amongst relevant health service

agencies within public, private and voluntary sectors require careful consideration.

RESEARCH AIM AND OBJECTIVES

iv

The project, lies broadly within the thematic programme entitled; “Improving the Quality of Life

and Management of Living Resources” (1998-2002), for research, technology, development and

demonstration under the European Union’s 5th Framework Programme. The aim was to examine

perceived health and social care needs among informal carers of older people, including mentally

infirm persons and to explore their experiences of home care.

Objectives

To determine the prevalence of informal carers according to their geographical location, in an

urban and a rural community;

1. To conduct a comprehensive exploration of the profile, role and needs of informal carers to

map their experience of caring;

2. To identify coping strategies employed by carers;

3. To explore the positive aspects of the caring role/relationship;

4. To establish carers’ satisfaction in relation to:

(a) Quality of life;

(b) Information needs;

(c) Day care and respite care;

(d) Transport;

(e) Emotional support.

In fulfilling these research objectives, rigorous systematic approaches were undertaken at all

stages of the research process. A mixed methodological approach, including focus groups, a self-

administered questionnaire and in-depth interview techniques were undertaken to optimise the

reliability and validity of the research process.

SUMMARY OF METHODOLOGY

Three focus groups were set up to explore informal carers’ subjectively perceived needs and

experiences of caring for general as well as mentally infirm older persons. The issues arising

from these focus groups influenced the content of the questionnaire;

In order to enhance further the development of the questionnaire, an expert panel was asked to

review the questionnaire prior to its use;

v

A postal survey was used to estimate the number of carers known to public health and community

psychiatric nurses;

A pilot study was undertaken with informal carers in a rural/ urban setting (N=40).

In the main study, the pre-tested questionnaire was distributed to informal carers (N=319).

Participants represented a randomised rural/urban population mix from within the Waterford

community care area of the South Eastern Health Board.

In order to obtain a more in-depth understanding of the experience of care-giving, respondents were

asked if they would be willing to participate in a one-to-one interview aimed at eliciting richer

data. This resulted in interviews with 10 informal carers. The purpose of the semi-structured

interviews was to verify and explore further the variables arising from responses to the

questionnaire.

The subsequent qualitative data were analysed through content analysis techniques. Quantitative

data were analysed using the Statistical Package for Social Sciences, version 9 (SPSS, 1997).

FINDINGS

The reasons underlying service deficits are complex and multifaceted. From the data collected, the

following findings emerged:

No evidence of existing registers of informal carers was found;

Inappropriate assumptions are sometimes made regarding carers’ roles, and responsibilities as

well as their availability and ability to provide care. The importance of needs assessment was

clear;

Health and social care boundaries mitigate against effective service provision;

Collaboration, communication and co-operation between carers and statutory and voluntary

services require considerable improvement;

Services are sometimes inflexible, poorly matched to carers' needs, often only becoming a

priority when a crisis occurs;

Lack of availability and reliability of some support services militates against enabling some

carers to continue in their care-giving role;

Shortages exist in terms of practical support structures and resources. Some services display

poor co-ordination and integration, evidenced by both service omissions and duplication;

vi

There is a significant lack of awareness amongst carers regarding health and social care

supports, benefits and entitlements. There is evidence of inequity and access difficulties for

carers seeking information regarding necessary supportive interventions;

Key aspects of carer-dependent relationships expose a variety of perceptions of informal

care. Misconceptions, pride and a sense of diminished independence amongst older people

can result in poor use of support services. Two-thirds (62.7%) of the sample reported that

they did not receive enough information about the availability of support services;

Almost half the sample surveyed (47.9%) reported care-giving as a twenty four-hour job, 89%

of whom provided care seven days a week. The psychological impact of the care-giving role

was quite profound. As one carer states:

“The stress is that you are twenty-four hours looking after them…it can take so much energy out of you, physically…your mind, body and soul”:

A carer in his late seventies, described the intensity of his role caring for his wife; who was

suffering from Alzheimer’s disease stating

" I have to do everything…all day long, day and night. I can't get a decent sleep. I have to be awake at the drop of a hat”.

There is evidence of considerable bureaucracy in the organisation of some services.

Some carers experience a lack of control or power over their care-giving role, primarily where

statutory bodies fail to consult with carers themselves.

Service delivery standards are highly variable with few accountability measures.

The nature and extent of the carers’ role is sometimes poorly understood. One carer encapsulated its

impact stating:

"Slowly but surely, you see your own physical health and radiance going out of yourself... The spark goes out of you, you just get drained slowly."

This carer went on to state that this was:

"not a complaint…just a plea from the heart of the story of carers".

Many carers do not use respite services, citing reasons such as feelings of guilt or a belief that

existing services were unsuitable to themselves or to the care recipient.

Nonetheless, a quarter (24.5%) of respondents related that they never had a break from their

caregiving role. A further two-thirds (66.7%) reported that they had never been offered respite

care.

vii

RECOMMENDATIONS

Reflecting on a variety of findings from the study, a number of recommendations for policy and

practice emerge as essential prerequisites towards assessing and addressing carers’ needs:

Service Issues

From a service perspective, the findings highlight the importance of developing seamless, co-

ordinated total systems of care aimed at facilitating an appropriate range of services in

response to carers’ continuing health and social care needs. The value of a collaborative

approach inclusive of both health and social care provision is important both at

interdisciplinary and interorganisational levels in securing partnerships between statutory,

private and voluntary agencies;

The anticipated continuing demands for family/voluntary care necessitates the integration of

carers’ needs and perspectives in future service planning and decision-making networks, in

partnership with statutory and voluntary bodies. The importance of co-ordination and

partnerships in this regard cannot be overstated;

The need to develop continually an understanding of the effectiveness of specific health and

social care interventions is of paramount importance;

Clarity and vision in required in relation to needs assessment structures for carers, coupled

with explicit service goals tailored to respond to and meet these needs. Subsequent care plans

must be evaluated and monitored, thereby ensuring that care needs are addressed and met;

Rapid response strategies focusing on individual carers’ needs in changing circumstances

such as increasing levels of dependency, illness or potential crises are essential interventions;

The development of considered, systematic and objective care management practice is essential

in order to accurately assess, monitor and evaluate carers' needs. Any such framework must

take account of individual differences such as individual carers' ability, competency and age; as

well as the dependency level of the dependent person;

Efficient evaluative and quality audit measures must be put in place;

Resource inefficiencies and inadequacies must be suitably redressed;

There is a substantial need for shared information systems across services in order to

establish the ‘true’ prevalence of informal carers and meet assessment, planning, and

operational requirements in a structured, systematic manner;

The reasons underpinning many of the problems identified in the study are multifaceted and

require concerted action in order to identify and respond to gaps across a wide spectrum of

issues in home care provision.

viii

Policy Factors

Meaningful practice and policy changes, directed and informed by current advances in the

evidence-base are required in order to redress service practice divides, thereby creating a more

enabling environment in which local service decisions can be made;

The Department of Health and Children and the Department of Social Community and

Family Affairs should commence information initiatives aimed at enabling carers to access

relevant information regarding a range of support services;

Government departments should make explicit their policies in relation to informal carers.

Such policies must recognise and acknowledge carers as unique individuals with distinct

needs and abilities;

The distribution of resources such as economic supports and allowances warrants review and

policy commitment and requires collaborative, cross-sectoral, co-ordinated planning across

categories such as age, illness and social grouping;

The level of interaction between statutory services and carers requires exploration,

monitoring and evaluation;

In acknowledging carers' needs and experiences, it is important that statutory care agencies

develop new and innovative service plans in response to their continuing health and social

care needs;

Education and training programmes should be established for carers in preparation for the care-

giving role;

User-friendly resource centres for carers should be developed at local level;

A co-ordinator of carer support services should be appointed as a link person between carers

and service providers. Such an advocacy service would increase awareness amongst carers as

to the availability of service entitlements and benefits;

The health and social care boundary must be addressed;

Links must be formed across the totality of health and social care services, towards the

development of more integrated, co-ordinated care pathways for carers;

Such approaches may result in the development of more efficient and effective use of

resources in terms of reducing unnecessary institutionalisation. More importantly, since older

people wish to remain at home for as long as possible, these pathways may enhance the

quality of life of both the carer and the older person.

ix

Recommendations for Further Research

Despite the significance of the current study, further research efforts must be encouraged by

commissioning studies that seek to assess and evaluate care interventions and methods of

service delivery;

Ongoing evaluation is required in order to map the quality and outcomes of support

structures and processes aimed at addressing carers' continuing health and social care needs;

A central priority hinges on the need for community-wide, multidisciplinary, multiagency

research, adopting an integrated, collaborative approach in areas of psychosocial, economic

and social research;

Research efforts beyond task orientated aspects of care-giving are warranted as a means of

exploring the humanistic components inherent in the art of caring;

There is a distinct lack of evaluative data on initiatives in the workplace to support carers;

Longitudinal studies are warranted with regard to the different needs and experiences that

carers hold, focusing on gender variability issues, whether caring on a full time basis, or

combining family caring with formal employment;

There is a growing emphasis on ‘second level’ research exploring what can be learnt from

published studies in specific subject areas. Consequently, aggregate analysis of research

findings may be formulated based on cumulative research evidence;

There is a need for improved identification and tracking measures in order to establish the

'complete' picture as to the prevalence of informal carers. New and innovative research

initiatives, coupled with enhanced levels of cross sectoral communication will be required,

particularly in uncovering 'hidden carers' who may be most in need of support services;

Meta analysis and collaborative, multidisciplinary research studies may produce formulae

that reduce methodological or operational difficulties. Such strategies may provide a wealth

of relevant data to better inform health and social care policy and service developments.

CONCLUSIONS

Caring for older people, particularly mentally infirm persons has been described as a

“…neglected area of health and social care in which there is considerable scope for quality improvement” (pp.x.v, Norman et al 1997).

As advocates for older people and their carers, the Department of Health and Children and the

Department of Social Community and Family Affairs hold a responsibility to monitor service

inputs, care processes and outcomes and identify service gaps and deficiencies. Consequently,

x

reliable and valid information bases are required at local and national levels in order to plan

needs-orientated service interventions based on the nature and extent of the care-giving role.

In the context of carer support services, an overarching belief amongst carers was

“that there should be a concerted policy effort to keep people at home, but people need financial assistance to do that” stressing the need for “surveillance”.

One of the most important factors involved in meeting carers' needs includes the provision of

information, enabling them to seek appropriate help and improve the quality of their lives in

order to care more effectively. The results of the current study constitute an informed

contribution to the evidence base regarding experiences of informal carers of an increasingly

ageing population. Since no contemporary systematic analysis of carers' needs has been

undertaken, it is anticipated that these findings may assist policy makers and service planners to

gain insight into the totality of the care-giving experience. Furthermore, these findings may assist

in informing and empowering the expanding number of informal carers of older people in our

communities.

Key Messages

xi

The national profile of carer issues must be raised.

The issues require comprehensive debate at corporate level.

Service providers must ensure that carer support services are made a priority of community

care strategies.

Community care planning and reshaping must reflect the tenets of the community care

reforms, specifically in terms of adequate support services and resources.

Systematic mapping of levels and patterns of carers' need requires structured assessment.

Community service development plans must detail mechanisms by which these needs can be

met proactively, setting out the resources required.

Ongoing monitoring and review of performance must be undertaken.

Carers must be involved actively in all stages of planning, monitoring and evaluation.

Carer support services must be linked to wider social and public health policies.

Problems regarding the health and social care boundary must be resolved.

Comprehensive health and social care strategies for carer support must embrace practical

developments regarding housing, transport, roads, education, training and safety issues.

xii

Contents Page Page No

Acknowledgements...........................................................................................................ii

Members of the Research Steering Group........................................................................ii

Academic Advisory Team.................................................................................................ii

Executive Summary..........................................................................................................iii

Contents Page....................................................................................................................xiii

List of Tables....................................................................................................................xviii

List of Figures...................................................................................................................xx

List of Appendices............................................................................................................xxi

Chapter One: Background to the Research Project

1.0 Introduction and Background to the Report..........................................................1

1.1 The Scale of Demographics..................................................................................1

1.2 Implications for Health and Socio-economic Policy............................................1

1.3 Community Care Reforms-Policy Contexts.........................................................2

1.4 Quality Issues........................................................................................................3

1.5 Profiling Informal Carers......................................................................................3

1.6 Research Aim........................................................................................................4

1.6.1 Research Objectives.....................................................................................4

1.7 Plan of the Report.................................................................................................4

Chapter Two: Research Evidence: A Review of the Literature

2.0 Introduction...........................................................................................................6

2.1 Operational Definition of Terms...........................................................................6

2.2 The Prevalence of Informal Carers.......................................................................6

2.2.1 The Ageing Profile of Informal Carers........................................................7

2.3 The Nature and Extent of the Care-giving Role....................................................8

2.3.1 The Diversity and Complexity of the Care-giving Role..............................8

2.3.2 Exploring the Care-giving Role...................................................................9

2.4 Responsibilities for Care-giving: Policy Contexts................................................10

2.4.1 Irish Policy Objectives.................................................................................10

2.4.2 Carer Participation and Consultation: The Policy-Practice Divide..............11

2.5 Community Care Policies and the Assessment of Carers’ Needs.........................12

xiii

2.5.1 Identifying Carers’ Needs............................................................................12

2.5.2 Assessment and Planning Procedures..........................................................14

2.6 The Health Profile of Carers.................................................................................15

2.7 Conclusion ...........................................................................................................16

Chapter Three: Methodology/Research Design and Procedures

3.0 Introduction...........................................................................................................18

3.1 Research Design Format.......................................................................................18

3.1.1 Summary of Data Collection Approaches....................................................18

3.2 Qualitative and Quantitative Research Perspectives.............................................19

3.3 Procedures: Methods of Investigation...................................................................19

3.4 Section 1: Focus Group Method...........................................................................19

3.4.1 Sample Selection and Size...........................................................................20

3.4.2 Analysing Focus Group Data.......................................................................21

3.5 Section 2: Pre Tested Questionnaire.....................................................................21

3.5.1 Designing and Developing the Questionnaire..............................................22

3.5.2 The Pilot Study.............................................................................................22

3.5.3 Gaining Access to the Pilot Sample.............................................................23

3.6 The Main Study.....................................................................................................24

3.6.1 Prevalence Data - Establishing the Database...............................................24

3.6.2 Defining Urban and Rural Sampling Frames...............................................24

3.6.3 Small Area Statistics....................................................................................25

3.6.4 The Main Sample.........................................................................................25

3.6.5 The Distribution Strategy.............................................................................26

3.7 Validity and Reliability.........................................................................................27

3.8 Analysis Plan for Questionnaire Data...................................................................28

3.8.1 Statistical Applications................................................................................28

3.9 Section Three: In-Depth Interview Technique......................................................29

3.9.1 The Application of Phenomenological Concepts.........................................29

3.10 Sample Selection: Size and Characteristics..........................................................30

3.11 The Interview Process...........................................................................................30

3.12 Data Production.....................................................................................................30

3.12.1 Data Analysis.............................................................................................31

3.13 Ethical Considerations..............................................................................................31

xiv

Chapter Four: Focus Groups, Presentation of Findings and Discussion of Results

4.0 Introduction...........................................................................................................33

4.1 Encapsulating the Totality of the Care-giving Experience ..................................33

4.2 Responsibilities for Care-giving...........................................................................34

4.2.1 Psychosocial Sequalae: Therapeutic Effects of Focus Groups....................35

4.2.2 General Health Issues...................................................................................35

4.2.3 Dependency and Inter-dependency..............................................................36

4.2.4 Support Systems...........................................................................................37

4.2.5 The Significance of Respite Services...........................................................38

4.3 Economic Issues....................................................................................................39

4.4 Family Dynamics..................................................................................................40

4.5 Service Information for Carers.............................................................................41

4.6 Appraising the Adequacy and Efficacy of Services..............................................42

4.7 Education and Training Issues..............................................................................43

4.8 The Physical Components of Care-giving............................................................44

4.9 The Positive Dimensions of Care-giving..............................................................45

4.10 Conclusion............................................................................................................45

Chapter Five: Presentation of Findings

5.0 Introduction...........................................................................................................46

Section One: Presentation of Questionnaire Data.............................................................46

5.1 Socio-Demographic Details of Carers..................................................................46

5.2 Extent of Care-giving Relationships and Responsibilities....................................48

5.3 Carers in the Formal Workplace...........................................................................52

5.4 Responsibilities for Care-Giving..........................................................................52

5.5 Health Profile of Carers........................................................................................53

5.6 Health Profile and Age of the Care Recipient.......................................................57

5.7 Economic and Practical Assistance with Care-giving..........................................58

5.8 Sources of Information Regarding Support Services............................................61

5.9 Carers’ Interaction with Health Care Professionals..............................................64

5.10 Respite and Day Care Services.............................................................................68

5.11 Factor Analysis: Analysing Scale Reliability.......................................................71

5.11.1 Factor Analysis..........................................................................................71

xv

5.12 Reliability..............................................................................................................72

5.12.1 Validity.......................................................................................................72

5.12.2 The Interrelations of the Concepts.............................................................72

5.13 Hypothesis Testing and Tests of Statistical Significance.....................................73

5.13.1 Hypothesis Testing Related to Social Isolation........................................73

5.13.2 Hypothesis Testing Related to Loss of Control........................................74

Section Two: Results of In-depth Interviews....................................................................79

5.14 Key Recommendations.........................................................................................79

5.14.1 Presentation of Results: Thematic Developments......................................79

5.14.2 Statutory, Professional, Voluntary and Familial Roles.............................80

5.14.3 Family Dynamics......................................................................................81

5.14.4 The Care-giving Environment..................................................................81

5.15 The Nature and Extent of the Care-giving Role....................................................82

5.15.1 Psychological Impact of Care-giving.........................................................83

5.15.2 Socio-Economic Factors............................................................................84

5.15.3 Physical Issues...........................................................................................85

5.15.4 Coping Strategies.......................................................................................86

5.16 Positive Aspects of the Carers Role......................................................................87

5.17 Impressions of the Adequacy and Efficacy of Carer Support Services................88

5.18 Care Planning........................................................................................................91

5.19 Education and Training.........................................................................................92

Chapter Six: Discussion of Results

6.0 Introduction...........................................................................................................93

6.1 Carer Language, Definitions and Interpretations..................................................93

6.2 Exploring the Nature and Extent of Care-giving..................................................93

6.2.1 Needs Assessment, Procedures and Policy..................................................94

6.2.2 Support Services..........................................................................................95

6.2.3 Profiling Carers’ Health...............................................................................97

6.2.4 Health Promotion Factors............................................................................98

6.3 Conclusion............................................................................................................99

xvi

Chapter Seven: Recommendations and Conclusions

7.0 Introduction...........................................................................................................101

7.1 Implications for Service Planning.........................................................................101

7.2 Implications for Policy..........................................................................................102

7.3 Recommendations.................................................................................................103

7.4 Implications for Further Research.........................................................................105

References.........................................................................................................................106

Appendices........................................................................................................................115

xvii

List of Tables

Chapter Two

2.1 Projection of Older People and their Need for Care (‘000)........................................8

Chapter Three

3.1 Main Sample Cohorts..................................................................................................26

Chapter Five

5.1 Carers’ Age.................................................................................................................46

5.2 Identifying Carer / Care Recipient Relationships.......................................................47

5.3 Number of Carers Co-residing with the Older Person................................................47

5.4 The Number of Older People being Cared for by each carer......................................49

5.5 Carers’ Time spent Providing Care Daily...................................................................49

5.6 Overnight Care Provided by Carers............................................................................50

5.7 The Extent of Care-giving as Expressed Weekly.......................................................50

5.8 Number of Carers Spending Time Engaged in Activities of Daily Living.................51

5.9 Carers’ Work Profile...................................................................................................52

5.10 Responsibilities for Care-giving...............................................................................53

5.11 Carers’ perceptions of their Physical and Emotional Health....................................54

5.12 Coping Strategies Adopted by Carers.......................................................................56

5.13 Profiling Carer / Care Recipient Relationships.........................................................57

5.14 Carers Receiving Home Help Expressed in Hours Per Week...................................59

5.15 Carers Receiving Home Care Assistance Expressed in Hours Per Week.................59

5.16 Carers’ Expression of their Need for Access to Support Services............................60

5.17 Sources of Practical Support and Assistance............................................................61

5.18 Sources as Identified as Providing Carers with Enough Information about.............63

Relevant Support Service

5.19 Carers’ Reported Interaction with Health Care Professionals..................................64

5.20 Professionals Carers would like more Support and Advice from.............................66

5.21 Professionals Reported as Providing the most Valuable Contribution to Carers......67

5.22 Carers’ Perceptions of People that are there to listen to them..................................68

5.23 Frequency of Breaks from the Care-giving Role......................................................69

5.24 Respite Services Profiling Carers Perspectives.........................................................70

5.25 Transport Problems Associated with Accessing Support Services...........................70

xviii

5.26 Inter-Item Correlations and their Significance..........................................................73

5.27 Mean Scores and Standard Deviations on Social Isolation.......................................74

5.28 Mean Scores and Standard Deviations on Loss of Control.......................................74

5.29 Descriptives for Loss of Control and Confusion......................................................74

5.30 Anova for Loss of Control and Confusion................................................................75

5.31 Anova Results for Loss of Control and Length of Time Caring...............................75

5.32 Descriptives for Loss of Control...............................................................................76

5.33 Loss of Control and Respite Care.............................................................................76

5.34 Descriptives for Self-Fulfilment and Length of Time since Receiving

a Break......................................................................................................................76

5.35 Mean and S.D. for Self-Fulfilment and Length of Time Since Receiving

a Break......................................................................................................................77

5.36 Social Isolation and the Number of Hours Spent Caring Daily................................77

5.37 Mean and S.D. for Social Isolation and the Number of Hours Spent

Caring Daily..............................................................................................................78

xix

List of Figures

Chapter Five

5.1 The Number of Years Spent Caring......................................................................48

5.2 The Number of Older People Suffering from Periods of Confusion....................57

5.3 The Age of the Care Recipient..............................................................................58

xx

List of Appendices

Chapter Two

2.1 Levels of User Involvement..................................................................................115

Chapter Three

3.1 Topic Guide for Focus Group Interviews.............................................................116

3.2 The Questionnaire.................................................................................................117

3.3 PHN Area and Percentage of Older People in Waterford Community Care

Area.......................................................................................................................130

3.4 Pilot Study: Analysis of Response Rates..............................................................131

3.5 Personalised Letter Accompanying Questionnaire...............................................132

3.6 Letter to PHN’s / CPN’s Accompanying Prevalence Register.............................133

3.7 Prevalence Register: Data Collection Form..........................................................134

3.8 Letter Administered to PHN’s / CPN’s Prior to Conducting Main Study............135

3.9 Profile of Non-Respondents in the Main Study....................................................136

3.10 Audit Trail for In-depth Interviews.......................................................................137

3.11 Proposed Interview Topic Guide..........................................................................138

3.12 Information Letter for In-depth Interview Participants.........................................139

3.13 Consent Form........................................................................................................140

3.14 Ethical Approval for the Study.............................................................................141

3.15 Extract From In-Depth Interview..........................................................................142

Chapter Five

5.1 Social Isolation and Loneliness Factor-Frequency of Constituent

Variables...............................................................................................................145

5.2 Self-Fulfilment Factor-Frequency of Constituent variables.................................146

5.3 Loss of control Factor-Frequency of Constituent variables..................................147

5.4 Factor Loading for Loss of Control......................................................................148

5.5 Factor Loading for Social Isolation and Loneliness.............................................148

5.6 Factor Loading for Self Fulfilment.......................................................................148

5.7 Computation of Factor Scores...............................................................................148

xxi

CHAPTER ONE

1.0 Introduction and Background to the Report

The ageing population within Ireland and the European Union represents a crucial challenge to the

development of appropriate health and social service planning for the 21st Century. Consequently,

increasing numbers of high dependency, frail and disabled older people will require new

interventions and improved health and social care inputs. Similarly, health promotion and health

maintenance initiatives will have to address the needs of healthy older people. Hence, greater

credence has been afforded to the importance of examining appropriate and necessary prerequisites

for efficacious care provision in the community and particularly in the family home. Successful

implementation of community care initiatives remains an integral objective for health and social

care agencies as well as interdepartmental policy makers. This introductory chapter contains a

rationale for this study in the form of an overview of pertinent issues surrounding informal care-

giving for older people with and without mental infirmity.

1.1 The Scale of Demographics

In Ireland, approximately 91% of the population aged 65 years and above, live in the community

in private households, 26% of whom are living alone. Of the 26% that live alone, 31% are

females and 20% are males (The Irish National Council on Ageing and Older People, 1997).

Recent demographic projections in Ireland indicate the number of older people is set to double

between 1996 and 2031, during a period in which the overall State population is expected to

remain stable (C.S.O, 1999). Consequently, the projected population of older people (>65 years)

in 2031 will be approximately 850,000 as compared with the 1996 level of 413,882.

Demographic projections within the European Union also indicate that in the next twenty years

the proportion of older people over 65 years will increase by 17 million, and by 5.5 million in

those aged 80 years and above (Eurostat, 1993). Thus, one third of the total population of Europe

will be over 65 years in 2020.

1.2 Implications for Health and Socio-Economic Policy

Clearly, the implications for both health and social care provision are quite profound. Given the

finite financial resources and gross domestic product allocation, in respect of healthcare funding,

demographic trends will impact on fiscal and healthcare policy formulation. This is particularly

pertinent in a global economic climate emphasising allocative efficiency. The question as to how

1

far demographic and social trends have been factored into the forward projections of government

expenditure, both in general and health service planning is an issue that requires further debate.

The Royal Commission on the Funding of Long-Term Care for the Elderly (DOH, 1999)

recommends:

The redefinition of the health and social care divide;

The establishment of a National Care Commission in order to monitor regulate and

standardise the quality of services and the manner in which care needs are assessed and

delivered for older people.

1.3 Community Care Reforms: Policy Contexts

The importance of finding the correct mix of policy priorities is pertinent to the development of

the 1999 UN theme of a society for all ages. Community care reforms in the U.K. (D.O.H,

1989) and Ireland (D.O.H, 1994) prescribed significant changes in health and social care. These

reforms highlight the importance of targeting services at those with the greatest need. They

include the provision for the needs of carers and interprofessional collaboration and co-

ordination. Central to this initiative is the requirement for individually focused assessment

strategies to establish an accurate profile of carers' requirements. As a result, the Irish

government stated that:

“The development and improvement of services for older people is a Government priority,”(D.O.H.A.C. 1998, p. 29).

The Irish report Shaping a Healthier Future: A Strategy for Effective Healthcare in the 1990's

(D.O.H, 1994) sets out targets acknowledging the need to involve people in taking

responsibility for their own health and securing the environmental support necessary to achieve

health and social gain. However, there is increasing evidence that achievements have fallen

short of aspirations (Benson, 1994, Goodwin, 1997, Ruddle et al 1997, Swanwick and Lawlor,

1998, D.O.H, 1999). According to Bowling (1997), the difficulties at policy level stem from the

relative dearth of research data regarding the appropriateness and efficacy of health and social

care policies. The application of scientific research methods through the systematic and rigorous

collection of data may facilitate assessment with regard to the effectiveness of current health

and social care services. This may lead to the achievement of predefined policy objectives

aimed at enabling and empowering carers to provide acceptable standards of care.

2

1.4 Quality Issues

Recent trends in health service planning foster a ‘predict and manage’ case management

approach (Gaucher and Coffey, 1993). Quality improvement and monitoring are at the forefront

of contemporary health service agenda. Fundamental changes in the structures and processes of

healthcare systems are occurring, including, the emergence of voluntary carers of older persons.

The relationship between formal and informal services is seen as increasingly important. This

represents a fundamental change in the manner in which service needs for older people should

be assessed, planned, organised, delivered, and evaluated in the years ahead. A major effect of

the change has been the paradigm shift from a ‘provider’ to a ‘consumer’ orientation.

Consequently, the prioritisation of appropriate carer-focused /needs-based, services underpinned

the South Eastern Health Boards’ philosophy of care in addressing targeted health service

planning and policy developments.

1.5 Profiling Informal Carers

Informal carers are the primary providers for older people in need of varying degrees of care. “Care

in the community has increasingly come to mean care by the community,” (Nolan and Grant, 1992,

p.44). The extent and nature of their multifaceted roles often exacts a wide range of transformational

changes in carers' lives. These include an array of functional dimensions ranging from

psychological, behavioral and socio-economic adaptations to physical modifications. In the main,

these careers are unpaid and they reduce significantly the potential burden of cost incurred by the

State in respect of care for older people. Caring for an older person over a long time will result in

substantial expenditure on transport, household appliances and adaptations, heating, laundry,

equipment and support services (Glendinning, 1988, Ruddle and O’ Connor, 1994).

Despite the significant contribution of carers to society, the evidence suggests that their unique

needs remain largely ignored (Richardson, 1992, Ruddle et al 1997, Henwood, 1998, Warner and

Wexler, 1998). This was also the conclusion of the report entitled: A Review of The Years

Ahead–A Policy for the Elderly (Ruddle et al 1997). Informal carers also constitute a relatively

hidden part of service provision in the care of the mentally infirm, with little thought being given

to their role (Benson, 1994). Furthermore, International and European research findings indicate

that inadequate attention has been paid to the inclusion of older people and their carers in

decision-making processes (Nolan and Grant, 1989, Ruddle et al 1997, Kellett and Mannion,

1999).

3

1.6 Research Aim

The aim of the study was to examine the substantive subjectively perceived health and social care

needs of informal carers of older people including mentally infirm persons, and to explore their

experiences of home care.

1.6.1 Research Objectives

To determine the prevalence of informal carers according to their geographical location, in an

urban and a rural community in the South East of Ireland;

To conduct a comprehensive exploration of the profile, role and needs of informal carers to map

their experience;

To identify coping strategies employed by carers;

To explore the positive aspects of the caring role / relationship;

To establish carers’ satisfaction in relation to:

(a) Quality of life,

(b) Information needs;

(c) Day care and respite care;

(d) Transport;

(e) Emotional support.

1.7 Plan of the Report

The report contains seven chapters:

Chapter one outlines key issues emerging from the extant literature and includes the

findings from the study.

Chapter two reviews some of the most relevant previous research regarding caring for

older people in home care settings.

Chapter three outlines the research methods, design and data collection procedures. The

rationale for selecting both a quantitative and qualitative approach to the research design

is discussed, indicating why a combination of focus groups, survey and in-depth

interview techniques were considered appropriate to achieve the aim and objectives of the

study.

Chapters four to five relate the study’s findings.

4

Chapter six includes a discussion of these results in the context of existing literature,

identifying key issues drawn together in a conclusion which highlights a number of over-

arching themes.

Chapter seven deals with service, policy and research recommendations.

5

CHAPTER TWO

2.0 Introduction

A systematic comprehensive review of relevant literature in the subject area was derived from a

wide range of electronic and manual sources as well as consultation with multidisciplinary

national and international experts in the field. The databases consulted included: CINAHL,

Medline, Bio Medical, EconLit, PsychLit, Socig, B.I.D.S, O.E.C.D and the W.H.O. These

databases were searched from 1990 to date.

2.1 Operational Definition of Terms

Informal carer is a term used in the International literature by researchers and policymakers,

(D.O.H., 1989, Kane and Penrod, 1993, Nolan et al 1996, Goodwin, 1997). This term is often

used as a means of differentiating voluntary care from that provided by a range of

professionals, commonly known as formal carers. Family caregivers include spouses,

siblings, children, close and distant relatives.

By arbitrary convention, older persons, commonly refers to people 65 years or above.

The term mentally infirm is used to describe persons aged 65 years or above, suffering form a

form of dementia or a degree of functional mental illness (W.H.O., 1993).

2.2 The Prevalence of Informal Carers

In the U.K. the term ‘carer’ entered the political vocabulary in the early 1980s, as the prevalence

of informal carers increased and their support as caregivers became acknowledged publicly

(Benson, 1994). Families have traditionally been the primary care-giving institution worldwide,

generally providing unpaid care on an ongoing full time basis. The family remains the main

arena in which care is given and received across Europe (Twigg and Atkin, 1994, Ruddle and

O’Connor, 1994, Levin, 1997, Wackerbarth, 2000). They provide 80-90% of personal and

instrumental assistance to older people, often serving as the link between the older person and

the formal systems (Walker, 1995). Consequently, less than 5% of older people in Ireland reside

in long-stay institutions (National Council on Ageing and Older People: Ageing in Ireland, Fact

File 1, 1997).

However, according to Giddens, (1998) the extended family has disintegrated somewhat and the

nuclear family is reshaping. The changing structure of the family challenges the very fabric of

6

society, calling into question long held family values, care-giving roles, duties and obligations

(Finch and Mason, 1993). McElwee (1999) depicts the family as a rapidly changing, diverse

social unit that reflects our value system. Some trends indicate that family support for older

people may be declining, suggesting that the needs of older people for care have exceeded the

family’s capacity to meet these needs (Brody, 1995). In the main, one family member takes

responsibility for the care of the older person (Nolan et al 1996) and there is evidence of

resentment amidst informal carers who are unsupported in their role by other family members

(Gilhooly et al 1994).

Research findings indicate that female carers are the predominant care givers (Nolan et al 1996).

In particular, carers of suffers of dementia in Ireland, have been reported as being female in 81%

of cases, 71% of whom were spouses (Ruddle and O’Connor, 1994). In Britain, more women are

caring for aged relatives than for children under 16 years (Brody, 1990). The Irish National

Council for the Elderly (1994) reports that since the initial decline in the birth rate, trends in

Ireland are moving in the same direction. However, the contribution of men to the caring role is

increasingly acknowledged in the literature (Whatmore, 1989, Syron and Keane, 1995).

While there are no current databases detailing the prevalence of informal carers in Ireland,

estimates suggest there are in excess of 100,000 (The National Council on Ageing and Older

People, Fact Sheet 9: 1997). However, previous researchers highlight the fact that prevalence

data is often based on those carers who are already in receipt of formal services (O’Connor et al

1988). Since there may be many ‘hidden carers’ unknown to community care services, the

prevalence of informal care-giving is difficult to ascertain accurately (Goodman, 1986),

particularly in rural areas (O’Connor et al 1988).

2.2.1 The Ageing Profile of Informal Carers

British and Irish surveys highlight the large number of carers who are aged themselves, and

unable to continue in the caring role due to poor health (Blackwell et al 1992; Eurobarometer,

1993;Ironside et al 1997). This supports the findings from American studies that caregivers are

often aged or chronically ill (Stevens et al 1993). Maggs and Laugharne (1996), suggest that life

changes and choices by older carers will add strain to the relationships between them and those

for whom they care. They suggest that health and social services need to work more closely with

carers and older people in order to manage the process of ageing more effectively.

7

2.3 The Nature and Extent of the Care-giving Role

The first attempt to quantify the extent and nature of family caring in Ireland was undertaken by

two research teams (O’ Connor et al 1988, O’ Connor and Ruddle, 1997). These surveys

represent innovative attempts to delineate carers of older people at home from the cared for, as

persons with separate personal needs, experiences and identities.

Despite the projections outlined in Table 2.1, important data as to the profile of people with

moderate or high care dependencies are unavailable. It is also uncertain as to how the level of

physical disability and mental infirmity amongst older persons requiring informal care may be

measured and monitored. This is a matter of some concern for the formulation of future service

plans. Indeed, Nolan et al (1996) argue that in order to shape policy at a macro level, an

empirically generated set of care-giving concepts will be necessary.

Table 2.1 Projections of Older People and Their Need for Care (‘000)

YEAR 1996 2016 2036 2056

>65 Yrs 414 584 908 1,018

Some care 50% 70% 109% 122%

A lot of care 29% 41% 64% 71%

Source: Dept. of Social, Community and Family Affairs, (1998)

2.3.1 The Diversity and Complexity of the Care-giving Role

Recognition of the nature and extent of the needs and experiences of carers of mentally infirm older

persons has resulted in a growing body of research (Coope et al 1995, Zarit et al 1999). Older

people suffering from dementia or Alzheimer’s disease commonly require high levels of

supervision, surveillance and assistance with activities of daily living. Goodwin (1997) expounds

upon this point, suggesting that the reality of informal care-giving is such that it tends to result in

significant levels of stress for caregivers. Graham et al (1997) concur with these assertions and

propose that mental healthcare teams need to evaluate their methods of dissemination of knowledge

to carers, devise educational packages and evaluate their effectiveness.

8

A recent Italian study found that 83% of older persons with some form of cognitive disorder live at

home (Savorani et al 1998). Of these people, 23% live alone and 52% depend on others for support

with activities of daily living. This is compared to 8% of the remaining population. These results

may be reflective of the unique mental health care system in Italy. The researchers analysed 140

family carers used a questionnaire devised by the Italian Association for Research and Assistance

for Dementia (ARAD). This questionnaire was formulated to establish the best approach to improve

quality of life and quality of assistance for the carer-care recipient dyad. Findings showed

behavioural and psychological disturbances of dementia as factors further increasing the

dependency of older people on carers and increasing the carers’ experience of stress. Carers in this

study ranked the most stressful problems arising from the behavioural disturbances of the demented

family member as follows: sleep disturbances, delusions, aggression, agitation and incontinence.

The study identified the need for educational and practical training programmes to improve carers’

quality of life and the quality of assistance afforded to them.

2.3.2 Exploring the Care-giving Experience

The practice of modern healthcare emphasises a holistic perspective, focusing on the human

experience. However, studies in the area of informal care-giving concentrate predominantly on

productive task-oriented components (Kellett and Mannion, 1999). Previous studies have shown

that focusing on tasks and functions alone is simply inadequate. Rather, there is a need to assess the

functional and rational aspects of care-giving so as to predict its effect on personal wellbeing,

lifestyle and behavioural indices (Hermann et al 1993, Waite and Knapman, 1993, Coleman et al

1994, Collins et al 1994, Fink, 1995, Boykin and Winland-Brown, 1995). Therefore, while the

practical elements of care-giving such as, ‘ how to cope’ and ‘ what to do’, are very important, there

is a need to explore conceptualisations of the ‘real’ meaning of family caring. In this way, a deeper

and more meaningful comprehension of what is a multifaceted and complex experience may

emerge.

The literature suggests that little attention has been paid to the rewarding or positive aspects of

caring (Farran et al 1991, Perry, 1995) or the relationships between these aspects (Bulger et al

1993). Much of the extant literature focuses on family ‘burden’, providing a wealth of evidence

of the hardship and health costs that informal carers endure (O’Connor and Ruddle, 1988,

Blackwell et al 1992, Philp et al 1995, Dello Buono et al 1999). Indeed the use of the terms

'need', and ‘burden’ portrays negative stigmatising social constructions (Edmondson, 1997)

9

depicting people in a dependent position and reinforcing the notion that they are problematic

(Caldock, 1994). Doornbos (1996) points out that none of the research studies focusing on the

families of the mentally ill explored family health or family strengths, despite the recognition of

family careers as experts in their relatives’ care management (Harvarth et al 1994).

2.4 Responsibilities for Care-giving: Policy Contexts

It has been suggested that community care policies have shifted the duty and responsibilities for

care from governments to informal caregivers, without the development of appropriate systems

to support and compliment their role (Evers, 1995). This is most evident in older persons who are

also mentally infirm. According to Benson (1994)

“Despite the well documented needs of these families, efforts by policy makers and mental health professionals to provide supportive services to family caregivers, have, until recently, been rare. As a result, many families with mentally ill members have felt virtually abandoned by treatment providers”, (p. 119).

In a recent survey, summarising European policies in relation to supporting family carers, Salvage

(1995) reports that there is no overall policy for supporting family care-giving in Italy. The study

also illuminates a lack of effective policy in the Netherlands, Greece and Spain. In Germany,

limited policies for carers render family members obliged and expected to care without any

remuneration (Pacolet et al 1999). While there are clear indications across Europe that future

Government policies will continue to emphasise enabling older people to remain cared for in their

own homes for as long as possible (Walker et al 1993, Pacolet et al 1999, Dello Buono, 1999), there

is a wide spectrum of differing and opposing views as to the extent to which families should be

expected to care for their aged relatives (Pacolet et al 1999).

2.4.1 Irish Policy Objectives

In Ireland, Government policy continues to place increasing emphasis on maintaining people in

the community, whilst acknowledging the valuable role of carers (Department of Social,

Community and Family Affairs, 1998). The Irish Government’s target, set out in The Strategy

Document is to ensure that at least 90% of persons over 75 years of age live at home (D.O.H,

1994). It highlighted objectives in relation to caring for ill and dependent older people in the

community. These included the maintenance of older people at home in accordance with their

wishes. The strategy also set out to encourage and support the care of older people in their own

community by family, neighbours and voluntary bodies. However, there was no detail as to what

10

services were to be responsible for care and support (Swanwick and Lawlor, 1998). According to

Edmondson (1997)

“Its aims remain in large part aspirational, and exist in a setting of social attitudes to ageing which have not kept pace with contemporary developments in life-course construction”, (p. 161).

Similarly, The Action Programme for the Millennium (DOH, 1997) illustrates the Irish

Government’s commitment to caring for older people, including mentally infirm persons. This

programme includes key priorities such as the provision of higher tax-free allowances for older

people and a new tax allowance for carers. Relaxing the qualifying criteria for the carers’

allowance remains central to increasing its value in real terms. The programme aims to ensure

that health and social services are responsive to carers’ needs providing adequate resources for

respite care. Although there are many complex social realities in relation to health and family

care that are difficult to disentangle, much remains to be done to achieve these objectives.

2.4.2 Carer Participation and Consultation: The Policy-Practice Divide

In Ireland and Europe there is a reorientation towards basing health and social care service

provision on the needs of the population in question (D.O.H, 1989, D.O.H, 1994). Nonetheless,

the absence of coherent policies for caregivers is evident both in the United States (Kane and

Penrod, 1995) and in Britain (Twigg and Atkin, 1994).

Previous studies in Britain (Thornton and Tozer, 1994; Myers and MacDonald, 1996) and

Scotland (Stalker et al 1993) have explored initiatives aimed at consulting with older people and

their carers in strategic planning, assessment and evaluation procedures. Keady and Nolan (1994)

highlight the importance of recognising and valuing the informal caregiver’s expert knowledge

of the care-giving relationship and interfamilial dynamics. Consequently, these authors have

developed the carer-led assessment process (CLASP), which emphasises the expert role of the

carer supported by the enabling role of health care professionals. While such objectives continue

to command widespread support, in practice there is little evidence of a move from prescriptive

to more collaborative care management approaches to defining and addressing carers' needs.

Drawing on interviews from 65 practitioners from four social work departments in Scotland, Myers

and Macdonald (1996) found that the healthcare practitioners' perspectives revealed service gaps

between the 'ideal' of carer empowerment and the 'reality' of everyday practice. This study,

11

undertaken at the Social Work Research Centre at the University of Stirling focused on evaluating

the effectiveness and efficiency of community care processes. The findings indicate that

organisational and resource factors, especially policy and fiscal constraints, are barriers that impede

the progress of carers in the hierarchy of user involvement, particularly at consultative and

empowerment level.

2.5 Community Care Policies and the Assessment of Carers’ Needs

Since 1995, carers in the U.K. have gained a legal right to have their own needs assessed as well as

those of their dependants (D.O.H, 1995). Although informal care-giving is recognised as difficult

and stressful, particularly in relation to mentally infirm persons (Livingstone et al 1996), carers do

not receive a full assessment of their needs (Newens et al 1995). There are methods for functional

assessment of older people to determine the amount and extent of service provision they require.

However, there is no evidence in the literature of a model of assessment to establish whether or not

caregivers possess the necessary skills to provide a multiplicity of care interventions and services. A

key objective embodied in the U.K White Paper Caring for People is that service users and

informal carers should be given a greater individual say in how they live their lives and the services

they need to help them to do so:

“Assessment will need to take account of the support that is available from such carers. They should feel that the overall provision of care is a shared responsibility between them and the statutory authorities and that the relationship between them is one of mutual support” (D.O.H, 1989, p. 28).

More specifically, it refers to the requirement to take account of the wishes of users and their

informal carers and where possible to include their active participation in facilitating flexible

services and consumer choice. User involvement refers to the participation of informal carers as

service users and providers at all levels of service planning and evaluation. Regarding individual

assessment, it relates to the integral role of users and carers as equal partners in the process of

identifying their needs and selecting service measures to meet these needs. Poulton (1997) outlines a

model of user involvement that may be applied to the inclusion of family carers in planning and

evaluating service plans pertaining to the care of older people in the community (Appendix, 2.1).

2.5.1 Identifying Carers’ Needs

Ageing, health and social care requirements are related (Fahey, 1995). In the past decade, the

knowledge base regarding current and future care needs of an ageing population has expanded,

particularly regarding care-giving (George, 1994; Nolan et al 1996). However, despite a

12

significant growth in the academic literature on care-giving and carers’ needs, many gaps

remain, at empirical, rational, and conceptual levels (George, 1994, Kellett and Mannion, 1999,

Zarit et al 1999). A key objective embodied in the White Paper; Caring for People (1989)

emphasises

“The role of an enabling authority is to identify the needs for care among the population it serves, plan how best to meet those needs, set overall strategies, priorities and targets, commission and purchase as well as provide necessary services and ensure their quality and value”(p. 37).

According to Nolan and Grant (1992) carers experience four main types of service need:

Information;

Emotional support;

Skills training;

Regular respite.

The authors suggest that respite services must be in planned in consultation with carers, available

when needed, and acceptable to both the carer and the dependent person. The importance of

obtaining respite care has been detailed in many studies (Nolan et al 1990, Parker, 1997). Mudge

and Ratcliffe (1995) conducted a survey exploring the views of 244 carers in Derbyshire, regarding

the availability of the services they perceived as necessary. This study confirms the importance of

residential and long-term supportive care interventions. These authors suggest that carers were very

keen to put forward their views and propose that more consultative research is necessary in order to

incorporate such perspectives. More recently, The Audit Commission (DOH, 2000) suggests that a

range of high quality support service options should be available to carers.

In a DHSS (1996) survey conducted in Northern Ireland, 42% of respondents reported never having

had a break from the caring role. Of those carers who reported having had a break, 75% of them

stated that another family member provided cover in their absence. Only 10% of carers reported

obtaining respite facilities through statutory or voluntary services. Many carers expressed feelings

of guilt when they suggested respite care to their dependent. In such cases the burden of guilt was

such that respite was just not an option. Only 21% of the carers reported receiving support from

statutory services in the month preceding the study. The uptake of support services was very low,

with only 9% of carers using respite care and 13% using day care services. More than half the carers

in this study reported having no knowledge of financial services or allowances available to them.

Furthermore, carers reported that family and friends were a greater source of information than the

13

media or their family doctor. Many studies suggest a lack of information as the main reason for

non-utilisation of services (Dello Buono et al 1999). Some 70% of carers in the former study

reported feeling isolated in terms of their lack of knowledge regarding available resources, stressing

that they did not obtain enough information on services available to carers. A lack of transport

facilities, predominantly in rural areas was an issue of central concern for carers in the Northern

Ireland study.

Fahey and Murray (1994) report similar findings in an Irish survey where almost 25% of older

people living alone in rural areas had no cars or any access to public transport. The centralisation of

health and public services rendered many of them inaccessible to carers and therefore they were

excluded from some potentially beneficial information and support systems. The authors called for

the planning and implementation of mobile health units for older people in rural areas as an

alternative model of healthcare delivery.

It appears that the uptake of services is just as poor in urban areas. Jennings et al (1997) examined

carers' knowledge, use of and satisfaction with day care services amongst a random sample of 122

informal carers of older people in inner city Dublin. They found that carers continue to shoulder the

considerable ‘burden’ of care. This descriptive study highlights the poor uptake of domiciliary care

and support services by carers and suggests that the care-giving role requires full acknowledgement

by society at large. Furthermore, the study revealed that many carers lacked information and

encouragement to accept domiciliary care where it is needed.

2.5.2 Assessment and Planning Procedures

An official monitoring exercise in the U.K. indicated that in many areas: "assessment procedures

seem to have developed without conceptually clarifying the requirements of assessment of need,"

(Department of Health, 1993 p.5). Previous studies have recommended an individual approach to

carer assessment (Ruddle and O’Connor, 1994, Ironside et al 1997). Twigg and Atkin (1994) assert

that a needs-led assessment assumes that all parties share a clear and unambiguous understanding of

the definition of need. Over the past decade, researchers in the area of family care have highlighted

the importance of developing dynamic assessment structures responsive to carers' needs (Nolan and,

1992, Evers, 1995, Ruddle et al 1997). According to Banks (1999) the sensitivity of the assessment

procedure is central to the implementation of responsive care-giving interventions. Particular

attention should be afforded to the sudden or gradual manner in which carers embark on the care-

14

giving role and the various levels of support that may be required at different points along the care-

giving continuum (DOH, 1999). Community care planning:

“…will be evolutionary. Planning needs to be a dynamic process, tailored to changing circumstances. It should assist health and local authorities as they move towards their role of ‘enabler’, rather than main provider, of all care services. To do this effectively, major providers of care services, service users and their carers, all need to be involved during the planning process” (Department of Health, 1989; p.13).

A British clinical audit on discharge planning between institutional and community nursing services

suggests the need for a thorough review of current policies, procedures and standards (McBride,

1995). Sixty sets of nursing notes were examined, a questionnaire was issued to 27 community

nurses and a total of 60 older people and 26 carers were interviewed. Findings revealed that only

10% of the sample of notes included patient discharge plans that commenced on admission. Most

older people (63%) and carers (81%) reported that neither the carers’ needs or those of the older

person were discussed prior to discharge home. The researchers suggest the establishment of a

multidisciplinary steering group to monitor discharge planning.

Irish and British surveys report that some older people may have to seek institutional care due to

a lack of appropriate supportive services in the community (Blackwell et al 1992; Williams and

Fitton, 1991). The latter researchers indicated that carers' problems often arose as a result of poor

discharge planning, resulting in readmission to hospital. Aside from the principal concerns in

relation to the wellbeing of both the carer and the older person, the potential economic costs and

misuse of funds is a matter of some concern. The researchers recommended that communication

between professionals and informal carers requires substantial improvement. Assessing the

carers' needs prior to discharge of the family member from hospital was proposed. The

researchers in both of these studies suggest failure to adequately recognise carers’ needs has

resulted in care interventions being inappropriate, unavailable or irrelevant. More recently, Zarit

et al (1999) found that carers’ perception of services as inappropriate was a barrier to their

uptake. They suggest that the need to redress this imbalance is the responsibility of the entire

multidisciplinary team as well as the statutory bodies.

2.6 The Health Profile of Carers

A common theme throughout the literature was a sense of loneliness and isolation, linked with

anxiety and depression in caregivers’ lives. The totality of the caring role, and the overwhelming

effect this may have on carers' lives was demonstrated in a study of informal caring in Northern

15

Ireland (DHSS, 1996). For many, caring constituted more than a full-time job with most spending

more than 40 hours a week caring.

Contemporary gerontological policy and practice note that caregiver stress is relieved by

community-based services (Zarit et al 1999). However, there is a dearth of research aimed at

examining the health needs of carers (Sisk, 2000) or determining which interventions are most

effective in alleviating carers’ stress. An American survey of a mixed group of 200 carers of

physically dependent care recipients and those with diagnosed Alzheimer’s disease or related

dementia found that carers’ perception of burden is related to their health related behaviour (Sisk,

2000). The findings suggest that those carers with a lower subjective burden scores engage in more

health promoting behaviours than those with higher subjective burden scores. This supports the

contentions that situational factors such as caregiver burden may affect health promotion (Pender,

1996). Pender suggests that negative perceptions of care-giving may militate against the carers’

ability to participate in various health promoting behaviours. This was also the contention of other

researchers who found that difficulties adjusting to the care-giving role might prevent carers from

attending to their own needs (Graham et al 1997, Hasselkus, 1998). Furthermore, modifying factors

such as the needs of family members, fear and anxiety, lack of knowledge about self-care, disability,

educational level and low income are known to affect health behaviour in a variety of situations

(Miller et al 1995).

British research by Collins and Jones (1997) suggests that carers, particularly spouses of frail older

people at home, experience considerable psychological distress. The researchers conducted a two-

year longitudinal survey of 752 informal carers of frail older people, using semi-structured

interview schedules. The findings suggest the need for greater collaboration between formal and

informal care. This supports the findings of an earlier Irish study (Blackwell et al 1992). Of

particular importance in supporting the health and social wellbeing of older carers and their

dependents is the development of health promotion programmes (The Carnegie Inquiry, 1990). The

inquiry suggests that these programmes need to be applied in association with policies affecting

environmental factors, housing, security, social cohesion and inclusion, accident prevention and

positive mental health.

2.7 Conclusion

16

The absence of rigorous definition means that figures may underestimate the prevalence of carers.

Furthermore, since prevalence data is sometimes incomplete, the ‘true’ extent of informal care-

giving is difficult to estimate. Whilst there are clear indications across Europe that future

Government policies will continue to emphasise enabling older people to remain cared for in their

own homes for as long as possible (Walker et al 1993, Pacolet et al 1999, Dello Buono, 1999), there

is no overall policy for supporting family care-giving. Policy makers sometimes assume that family

members, particularly women, are willing and able to engage in care provision (Banks, 1999, Sisk,

2000). However, socio-demographic changes are impacting upon old age dependency ratios,

influencing demands for ‘long term care’ and the availability of informal carers (Fahey and Murray,

1994, Swanwick and Lawlor, 1998, Department of Social, Community and Family Affairs, 1998).

The importance of empowering carers and developing 'real' partnerships between carers and service

providers has been highlighted (Twigg and Atkins, 1994, DOH, 1999). The provision of

information regarding service availability and eligibility criteria is essential. Previous studies

emphasise the importance of consulting with older people and their carers in strategic planning,

assessment and evaluation procedures (Stalker et al 1993, Keady and Nolan, 1994, Thornton and

Tozer, 1994, Myers and MacDonald, 1996). Contemporary approaches to determining carers’ needs

and experiences are unsystematic, lack monitoring and evaluation and are predominantly

normatively derived without structured consultation with carers themselves. Individually focused

needs assessment strategies are essential in order to establish an accurate profile of carers'

requirements in the determination of appropriate service needs (Twigg and Atkin, 1994, Keady and

Nolan, 1994, Kane and Penrod, 1995, Ruddle et al 1997, D.O.H .2000). The significance of support

and respite has been detailed in many studies (Nolan et al 1990, Mudge and Ratcliffe, 1995, Parker,

1997, DOH, 2000). The need for greater flexibility and scope in the way multidisciplinary

community care teams function in order to invoke more effective and efficient care intervention

measures is evident.

17

CHAPTER THREE

3.0 Introduction

In order to address the research objectives, a systematic and rigorous research approach was

employed, as was a pluralistic approach to data collection. Issues regarding design, sampling,

instrumentation and methods of data analysis are discussed.

3.1 Research Design Format

Firstly, focus group consultations with informal carers were conducted. Emergent themes were

analysed and used subsequently to inform the questionnaire design. A survey approach was

tested in the pilot study, using a triad of distribution strategies aimed at assessing the best

technique for achieving high response rates. In the main study a pre-tested questionnaire,

comprising closed and open questions was used with a stratified, systematically randomised

sample of carers in urban and rural home care settings. Prior to this its validity and reliability

was tested. This was followed up with in-depth interviews. Data were analysed using descriptive

and inferential statistical techniques.

3.1.1 Summary of Data Collection Approaches

1. Three focus groups were set up to explore informal carers’ subjectively perceived needs and

experiences of caring for general as well as mentally infirm older persons. The issues arising

from these focus groups contributed to the formulation of the questionnaire;

2. In order to enhance further the development of the questionnaire, an expert panel were asked

to review it prior to distribution in the main study;

3. A postal survey was also undertaken to estimate the number of carers known to public health

and community psychiatric nurses;

4. A pilot study was undertaken with informal carers in a rural / urban setting (N=40);

5. Using the pre-tested questionnaire, informal carers were surveyed in the main study (N=319).

Participants represented a randomised rural/urban population mix from within the Waterford

community care area of the South Eastern Health Board;

6. To obtain a more in-depth understanding of specific contextual issues related to care-giving,

respondents were asked if they would be willing to participate in a one-to-one interview aimed

at eliciting richer data. This resulted in semi-structured interviews with 10 informal carers. The

purpose of the interviews was to verify and explore further responses to the questionnaire items.

18

3.2 Qualitative and Quantitative Research Perspectives

Researching individual perspectives of care-giving is a complex and arduous exercise,

sometimes fraught with methodological difficulties (Zarit et al 1999). As a result a triangulation

of both quantitative and qualitative research approaches was chosen. Nolan and Behi (1995)

contend that triangulated studies confirm and augment the completeness of the research findings,

and result in richer and deeper research evidence.

Since the mid nineteen-eighties, the value of qualitative methods has received considerable

acknowledgement and recognition in health and social policy research (Denzin and Lincoln,

1994, McKenna, 1997, and Cutcliffe and McKenna, 1999). Qualitative methods have served to

compliment quantitative methods (Tester, 1999). In the present study, the purpose of the

qualitative aspect of the research approach was to describe and interpret the human phenomena

under investigation. One of the central advantages of this approach is the potential to generate

needs assessment data that possess the potential for actionable outcomes.

3.3 Procedures: Methods of Investigation

Three distinct data collection techniques were employed:

Section 1, focus group discussion;

Section 2, pre-tested questionnaire; and

Section 3, interview schedule.

3.4 Section 1: Focus Group Discussion

Kitzinger (1994) defines focus groups as "group discussions organised to explore a specific set

of issues" (p. 103). The focus groups were comprised of carers of older persons with and without

varying degrees of mental infirmity. The purpose of the groups was to gain insight into the ‘felt’

and ‘expressed’ needs and experiences of carers’ of older people in home care settings.

This method is particularly appropriate in population groups who may feel disempowered

(Kitzinger 1994) and provides a safe environment for participants to share their thoughts and

feelings (Kingry et al 1990). Key issues, particularly those of a personal or sensitive nature, are

more likely to be probed successfully in a relaxed research atmosphere (Krueger, 1994). This

technique fosters group synergy and possesses the capacity to gain immediate validation of

information by other group members (Gray-Vickery, 1993). The use and application of the focus

19

group method in gerontological research has been supported because of its potential to gain

insight into participants’: “feelings, opinions, and perceptions about a given problem,

experience, service, programme, or phenomenon” (Gray-Vickery, 1993, p. 27).

The focus group has the potential to bring the researcher closer to the research topic through a

direct and intense encounter with key individuals (Clarke, 1999). However, the breath of

information possible in one group sitting is somewhat limited, despite its inherent content value.

Discussions can be dominated by a couple of people or participants may conform to a perceived

group norm (Macleod et al 1996). Also, data collection and analysis are difficult and time-

consuming. Stewart and Shamdasani (1990) identified three different forms of moderator bias.

Firstly, personal bias may occur whereby comments expressing the moderator’s own points of

view are welcomed. Secondly, the moderator may exhibit an unconscious need to please the

participants. Finally, the moderator may welcome points of view that are internally consistent.

Of particular significance was the fact that data produced in the focus groups facilitated the

development and refinement of the questionnaire, as well as contributing to a theoretical

framework for the study. According to Stewart et al (1990) focus groups are particularly useful

in the development of questionnaires and can be of assistance in establishing the validity of an

instrument. While the researcher in the current study believes that the needs and experiences

detailed by the carers in the focus groups were fairly typical, caution must be taken in

generalising these findings beyond the sample from which they were drawn (Byers and Wilcox,

1991).

3.4.1 Sample Selection and Size

Focus groups usually employ purposive sampling techniques, selecting participants as a group

because of the nature of the research question (Robinson, 1999). Purposive sampling aims to

ascertain insights into the cultural variables of the population and tends to generate rich data.

The focus group sample was accessed following consultation with a combination of statutory and

voluntary agencies. These included a general medical practitioner group, the Waterford Carers

Association, Waterford Community Care and the Waterford Alzheimer’s society. The focus

groups took place between March and May 1999 and were moderated by the researcher. These

groups included a rural and urban mix of informal carers of older people with and without mental

20

infirmity. A total of 17 informal carers were recruited to three focus groups with each group

varying in size from three to eight members.

The ultimate success of data collection often hinges upon careful planning and facilitation

(Roberts, 1997). As a discussion guide, group members were given brief written material on the

research aims and objectives. Topics for inclusion in the discussion were selected based upon

their relevance to the study’s aim and objectives (Appendix 3.1). Discussions began with an

overview of the aim and objectives of the study, followed by general questions. The researcher

probed further with more specific questions until all respondents got an opportunity to express

their views. The sessions ended with a summary of the discussion, seeking verification from the

participants.

3.4.2 Analysing Focus Group Data

The data were transcribed and subsequently analysed by the researcher. Transcriptions were

analysed in accordance with the Framework Analysis approach (Ritchie and Spencer, 1994).

3.5 Section Two: Pre-tested Questionnaire

Ultimately, the choice of one research design over another will depend on the nature of the

phenomena to be investigated, the aim of the research and the amount of the existing knowledge

(Cormack, 1996). The survey approach embodies a non-experimental research strategy focusing

on the retrieval of data on the attitudes, beliefs, preferences and experiences of respondents

through direct questioning of a specific sample (Polit and Hungler, 1991). Within survey design

quantitative and qualitative approaches may be used for the purposes of description, analysis and

comparison (Parahoo, 1994). According to Cormack (1996) the survey design can be applied to

many fields of enquiry and its principles continue to provide an indispensable tool for planners

and policy makers. To address the study’s objectives a questionnaire was employed as a means

of collecting relevant data

Cormack (1996) suggests that compared with interviewer interpretation, questionnaires are less

prone to bias. Nonetheless, the potential for bias is acknowledged; particularly where some

questionnaire items sought to explore the level and quality of interaction between respondents and

health care professionals. Since respondents were aware of attempts to seek their views, the

Hawthorne effect may have modified participants’ responses to questionnaire items. It is further

21

acknowledged that these problems may arise where health care professionals such as public health

nurses distribute and collect the questionnaires. Accepting this, the results from the pilot study

showed that this distribution and collection strategy served to increase response rates and facilitate

access to the target population. Nonetheless, in an attempt to control for bias the questionnaires

were delivered and returned in sealed envelopes and the public health and community psychiatric

nurses were not involved in any other aspect of the study.

There are other problems with the use of questionnaires. For instance, Parahoo (1997) warns that it

may be difficult to ensure that the intended respondent completed the questionnaire and Cormack

(1996) points out that questionnaires may only address the research themes superficially (Cormack,

1996). Consequently, the researchers were aware that the uncritical use of such a technique may

lead to data that provides an incomplete picture of care-giving.

.

3.5.1 Designing and Developing the Questionnaire

The questionnaire approach to collecting data is a simple, rapid and efficient method whereby

relatively vast volumes of data can be obtained from large samples across a wide geographical

area (Sheehan, 1996). In the current study, the questionnaire was designed from the findings

from the literature review, data from the focus group data and expert opinion (Appendix 3.2). An

extensive review of the literature was conducted to ensure the comprehensiveness of each item.

This enhanced its content validity and issues such as sensitivity, appropriateness and

acceptability were given due consideration throughout the entire design. In addition, the content

of the questionnaire reflected the substantive aim and objectives of this study (see Appendix 3.2).

3.5.2 The Pilot Study

The importance of testing all aspects of the questionnaire rigorously as well as potential

distribution formats is a key issue in increasing comprehension or completion (Bell, 1991;

Cormack, 1996). Undertaking a pilot study enhances the quality of the research design since the

feasibility of the planned study, the appropriateness of the instrument, problems with data

collection and analytical strategies can be examined (Richardson, 1994). It assisted in examining

the content and structure of the instrument and in the determination of item clarity and

readability. Furthermore, the questionnaire items were reviewed and amended based on

responses in the pilot study. Amendments were made to items concerning social need, respite

22

service options as well as those relating to psychological disturbances and confusion. These

strategies enhanced the validity of the questionnaire.

3.5.3 Gaining Access to the Pilot Sample

On investigation, no registers of informal carers were found in either the statutory or voluntary

services. Several strategies, such as media advertisements were considered in order to gain

access to the target population. While accessing carers in this way may result in a larger sample,

the nature of such approaches may render the sample over representative in terms of those who

are articulate. Specifically, this may impact negatively upon the opportunity for a wider range of

carers to be selected. Since public health and community psychiatric nurses in the area knew

potential respondents, the researcher sought permission to make contact with carers through

these health care professionals. Billings and Cowley (1995) highlight the potentially vital

position of community nurses in accessing data sources, stating“ has yet to be fully recognised

and taken advantage of”(p.727).

It was intended to select a sample that represented the target population of carers within the South

Eastern Health Board region. Since variations in urban and rural settings, as well as socio-economic

factors may impact upon accessibility to services (D.O.H, 1994), due consideration of geographical

strata differentials was deemed important. Hence, a stratified rural/urban convenience sample of 40

informal carers was selected from the prevalence register detailing carers known to public health

nurses in Area 24, Tramore. The pilot sample was drawn from this area on the basis of its socio-

demographic profile (Appendix 3.3).

In order to explore approaches aimed at enhancing the response rate in the main study, three

different methods of questionnaire distribution were tested. Fifteen questionnaires were posted to

potential respondents for self-completion. For a further fifteen questionnaires, public health

nurses were asked to act as distributors. The remaining ten questionnaires were completed

through face to face interviewing by the researcher. From the high quality of the responses

obtained, it was decided to select the second approach for the main study. An analysis of

response rates is provided in Appendix 3.4.

Burnard and Morrison, (1994) maintain that a full and comprehensive explanation about the

research is likely to encourage people to participate in the study. Therefore, respondents,

23

respondents were well informed and given clear and succinct information. As a means of

introduction, a personalised letter was sent to each potential respondent explaining the purpose of

the study and providing assurances of confidentiality (Appendix 3.5). Only the researcher knew

the encoded names of respondents.

3.6 The Main Study

For the purpose of randomisation a register detailing the prevalence of carers was seen as essential

in order to develop an adequate sampling frame. However, the pilot study showed that no register

of informal carers was found. A prevalence register was set up.

3.6.1 Prevalence Data - Establishing the Database

An outline of public health nursing areas and the percentages of older people in these areas are

included in Appendix 3.3. Letters and prevalence data forms were sent to all 28 public health nurses

as well as the 5 community psychiatric nurses (Appendices 3.6 and 3.7). The prevalence register was

closed three months after the initial written contact in order to commence the process of

randomisation and selection of potential respondents. The total number of informal carers identified

by public health nurses and community psychiatric nurses amounted to 566 and 44 persons

respectively representing a total of 610 informal carers on the prevalence register.

Whilst the prevalence data obtained is clearly incomplete, it represents a ‘snapshot’ of the extent of

informal care-giving within the overall Waterford community care area. Nonetheless, the ‘true’ extent

of informal care-giving is difficult to project, not least because of a paucity of documentation but also

because many carers do not link with statutory or voluntary health care organisations. Consequently,

health or social care providers may not know of their existence. Furthermore, tracking non-

respondents in the pilot study revealed that some potential respondents do not identify themselves as

informal carers. Thus, the process of attempting to ascertain an accurate picture of the prevalence of

informal careers of older people in a given demographic area was exceedingly difficult.

3.6.2 Defining Urban and Rural Sampling Frames

Since community healthcare areas do not always correspond to the District Electoral Division,

(D.E.D.) it was not possible to structure the geographical areas in this way. Furthermore, because

the distribution of carers recorded on the prevalence register was found to be disproportionate

24

across D.E.Ds, it was not possible to randomise the sample solely on the basis of D.E.D.

location.

The most recent comprehensive review of rural / urban areas was carried out as part of the

processing phase of the 1996 census (C.S.O, 1996). It is acknowledged that a further limitation

of determining urban and rural areas from census data is that there may be differences depending

on the location of a specific area from the centre point of the area. This may impact further on

proximity to services, despite the classification of an area as rural or urban. In order to augment

the accuracy of the reporting of areas as urban or rural for the stratification process, personal

communication was made with the relevant planning authorities and county councils. This was

also considered to be important in the light of the changing geographical profiles in Ireland,

arising from urbanisation and the demise of rural Ireland. Indeed, the scale of development is

such that some areas need ongoing reclassification (Sinclair, 1999).

3.6.3 Small Area Statistics

Many questions concerning health status, population needs, healthcare delivery and use are

sensitive to both scale and location (Sinclair, 1999). Since many healthcare issues are addressed

at relatively high levels of aggregation, for example at national and health board level, any

significant variations between different regions may be hidden. Interestingly, the Department of

Health’s strategy document (1994) acknowledged this phenomenon and reported that: “pilot

work on local information systems has proven that there can be significant variations in health

needs within relatively small areas”(p. 24).

According to Sinclair (1999), area based measures of deprivation are invaluable tools in

examining differentials related to issues such as mortality and health service use by small area.

Such measures are potentially useful in identifying specific areas of need for priority funding,

health promotion and service development. The application of a needs-orientated approach based

on the analysis of small area data may harvest the best interests of a particular population group.

3.6.4 The Main Sample

In order to achieve representativeness, the main study sample was selected via a process of

systematic randomisation. Parahoo, (1997) illustrates how every nth number on a list may be

chosen until the required sample is reached. Thus, within the sampling frame every carer on the

25

frame had an equal chance of being selected. Consequently, the sample was stratified into

categories of carers of older people with and without mental infirmity. A further stratification

related to rurality or urbanisation.

The total number of general category carers as outlined above amounted to 566 persons.

Concurrent with standard research practice, those carers included in the pilot study were

excluded from the main study. Thus, the total number of general category carers included in the

randomisation process was 526. Prior to the stratification, the 44 carers of mentally infirm

persons, identified by community psychiatric nurses were combined with the general categories

of urban and rural carers. On analysis, the numbers of informal carers submitted by public health

nurses and community psychiatric nurses was geographically disproportionate, since a greater

proportion of carers were drawn from rural areas. However, it was difficult to avoid this due to

the reliance on these professionals in obtaining the sample. Following urban/rural stratification,

four cohorts emerged where the total sample was N=319. The final breakdown of carer

categories included in the main study is set out in Table 3.1 below.

Table 3.1 Main Sample Cohorts

Category of Carer Numbers Randomised

Percentage of Sample

1 General carers in urban areas n=141 43.9% (44%)

2 General carers in rural areas n =178 55.6% (56%)

3 Carers of mentally infirm persons in rural areas n=11 3.44 %(3.4%)4 Carers of mentally infirm persons in urban

areasn=15 4.70% (4.7%)

3.6.5 The Distribution Strategy

Since it proved to be the most effective and efficient distribution strategy in the pilot study,

public health and community psychiatric nurses were selected to distribute and collect the

questionnaires. A personalised letter was sent to each public health and community psychiatric

nurse (Appendix 3.8). Individual personal contact was also maintained throughout the research

process.

26

It was acknowledged that while many of the respondents may have a willingness to respond to

the questions, they were often aged themselves. These factors coupled with the demands of the

care-giving role may reduce the potential response rate or the level of completed responses.

Where possible a log of returns was held in order to track and obtain a profile of non-respondents

(Appendix 3.9). On tracking initial non-returns, 5 carers stated that despite their interest in

participating in the study they could not do so due to literacy/ writing difficulties. Following

informed consent, face-to-face administration of the questionnaire occurred in these cases.

3.7 Validity and Reliability

The psychometric properties of the questionnaire were tested in terms of two essential criterion,

validity and reliability. Validity means that the questionnaire measures what it is intended to

measure, while reliability means that it does so consistently (Polit and Hungler, 1991). Face

validity, was tested to establish whether or not the questionnaire appeared to measure the

appropriate constructs. The appropriateness of each item in the questionnaire was assessed, and

items unrelated to the characteristics under investigation removed. Content validity pertaining to

the questionnaire items was sought from a panel of experts who had researched and published

internationally in the subject area. Subjecting the instrument to the scrutiny of such experts is a

measure of considerable worth (Burns and Grove, 1987).

Key aspects regarding the reliability of a questionnaire relate to its consistency, dependability and

stability as a measuring tool. The stability of a measure relates to:“the extent to which the same

results are achieved following repeated administrations of the instrument” (Polit and Hungler,

1991, p. 412). In this way, reliability focuses upon the instrument’s susceptibility to extraneous

factors from one administration to the next. The reliability of the questionnaire as a data collecting

instrument, is a criterion of immense importance in assessing its adequacy and quality. The extent to

which the questionnaire scores are free from measurement error is a measure of its external

reliability (Sternberg, 1993). External reliability was examined at the item level, through the test-

retest process. At time one, (T1) and time two, (T2) (two week interval) the same questionnaire was

administered to selected respondents in the pilot study. Interestingly, the reliability co-efficient for

these variables was at the 0.01 level; with a significance level of 0.883 at post-test. This high

correlation indicated a favourable degree of reliability, supporting the consistency and value of the

questionnaire as an appropriate data collection tool.

27

The internal reliability of the questionnaire was estimated in terms of its repeatability and

consistency as an empirical measure by the application of Cronbachs' alpha procedure (Cronbach,

1951). Coefficients, detailing computations of factor scores were used a measure of equivalence. In

the current study, Cronbachs' alpha was greater than 0.70 indicating a high level of internal

consistency (Polit and Hungler, 1991).

3.8 Analysis Plan for Questionnaire Data

According to Parahoo (1994), questionnaires may provide a most reliable method of data collection

since all respondents are asked the same standardised questions. Before engaging in the data

analysis process, data were checked, cleaned, screened for mistakes and missing items in line with

recommended good practice (Polit and Hungler, 1991). Individual carers served as the unit of

analysis. Descriptive and inferential statistics were used to describe and analyse relevant data

generated from the collated questionnaire data. Though largely a quantitative instrument, analysis of

the qualitative aspects of the questionnaire involved a process of making sense of the findings. This

qualitative element served to strengthen and augment quantitative findings.

3.8.1 Statistical Applications

All questionnaire items were coded and the results in relation to each variable were analysed using

the Statistical Package for Social Sciences Windows, version 9 (SPSS, 1997). Tables of frequency,

bar and pie charts were used to illustrate relevant descriptive data. The valid percent is a measure of

all valid responses expressed in tables since this figure takes account of responses coded as non-

applicable or missing. Where results do not equate to 100% (N=215) this was due to rounding,

multiple answers, non-applicable or missing data. As stated above in 3.9, a statistical profile of

significant bivariate correlations was conducted on the test-retest data generated in the pilot study.

Bivariate analysis of questionnaire items was applied to explore relationships between variables as

part of the test-retest process. Statistical significance was generally accepted at 0.05%. On test-

retest, Spearmans’ correlation coefficients (two-tailed) were computed between the variables to test

the relationship between them. These findings verify the stability of the instrument with acceptable

test-retest data, 0.05% internal consistency reliabilities and comparable patterns of significance.

Since reliability co-efficients produced values 0.01, the difference between the two sets of data

(T1 and T2) could have occurred by chance only one in a hundred times.

28

Additionally, 20 Likert scale items, presented in section three of the questionnaire, were factor

analysed using maximum likelihood estimates with Equamax rotation. Assumptions for

parametric tests were met since the distribution of scores for each subscale was approximately

normal, involved the estimation of at least one parameter and lay at the interval scale of

measurement. Parametric statistical tests using t-tests and Anova were used.

3.9 Section Three: In-Depth Interview Technique

This qualitative approach to investigating carers’ perceptions of their needs and experiences, and

the meaning they attach to their personal situations, have been described in research literature as:

“a promising area of research” (Rose 1996, p.73). The rationale underpinning the use of in-

depth interviews was based on eliciting the carers’ perspective of contextual phenomena of

interest. Empirical literature reviewed in chapter two illustrates clearly the dilemma regarding

the application of appropriate research methods to the study of informal care-giving. Such

research challenges prompted the application of a qualitative method underpinned by the

phenomenological approach.

3.9.1 The Application of Phenomenological Concepts

A central premise of hermeneutic phenomenological inquiry lies in the search for deeper

meaning, understanding and insight into human experience (Robertson-Malt, 1999). This

qualitative approach emphasises subjectivity and values experiences as a route to theory

development. In-depth interviews grounded in phenomenology were particularly appropriate for

gaining a more comprehensive and explicit picture of carers’ personal experiences. In this way, it

was possible to augment and build upon the questionnaire data, journeying from general to more

specific experiences. The narrative method is akin to storytelling. According to Tilley et al

(1999)“ a story framework can help researchers to reflect on a process of social scientific

investigation, and to consider how to ‘go on’ in that process, (p.1221)”.

Consequently, there is considerable potential in delving beneath the surface responses explored

in the questionnaire, in order to elicit ‘true’ meaning in complex issues pertaining to attitudes,

behaviour and experiences. Issues can be probed, answered and clarified in an open non-

directive relaxed atmosphere. Furthermore, this approach enhances the rigorous nature of the

data collection process in its totality thereby authenticating the veracity of the findings.

29

3.10Sample Selection: Size and Characteristics

A sample of carers were selected on a voluntary basis, from those respondents to the

questionnaire who indicated a wish to share their personal needs and experiences in a more

detailed format. Since they had already taken part in the completion of the questionnaire, this

sample was relatively easy to recruit, near at hand and likely to respond. Out of the total sample,

51.7% (N=111) volunteered to partake in further research and were therefore systematically

randomised. Upon interviewing, the optimum sample size was reached when data saturation

occurred after 10 interviews.

3.11 The Interview Process

In narration the story is created during the interview (Sandleowski, 1991). Respondents were

reminded of the aim of the study, and the process whereby their names were selected. An audit

trail detailing how the interview guide was formulated is presented in Appendix 3.10. A sample

topic guide regarding phenomena of interest was developed from a data matrix drawn from focus

group and survey data as well as evidence from the extant literature. Subsequently, participants

were contacted in writing and consulted with regard to the relevance of suggested items in the

topic guide. Additionally, respondents were asked to suggest relevant topics for inclusion in the

interview schedule. The timeframe for interviews ranged between 1-1.5 hours. From the pilot

study, it was felt that this was long enough to afford the carer the opportunity to share their

experiences with the researcher. Attention was also paid to linguistic and extra-linguistic

behaviour, elements of ‘paralanguage’, voice inflection and quality, silences and body language.

The quality of the interview is highly dependent on interview/respondent rapport. The

researchers were aware that what people ‘say’ is not always what people ‘ do’. Furthermore,

respondents’ deliberate social desirability bias may limit the credibility of the data (Bowling,

1997). Yet, another weakness of this method is the effect the researcher may have in the

interview situation Therefore, questions must be asked in a non-biasing and non-leading way,

through the use of neutral probes (Bowling, 1997).

3.12 Data Production

The choice of the narrative method provided the study with rich material for analysis. The in-

depth interviews yielded vivid comprehensive data illustrating the meaning that carers attributed

to a wide range of complex issues. The stories, derived from carers’ experiences were coloured

30

by personal attitudes, beliefs, values and perceptions. In the main, the data stemmed from the

topic guide provided to all participants (Appendix 3.11). These guides accompanied by

explanatory letters (Appendix 3.12.) were posted to all participants two weeks before the

interview process.

3.12.1 Data Analysis

Analysis of the qualitative data was related to findings arising from quantitative data analysis.

Von Post and Eriksson (1999) suggest that the relevance of a story lies within the potential of the

narrative language to portray a certain understanding of reality. Data were analysed using the

framework analysis format detailed in the genesis of focus group data (see 3.6). However, there

are potential pitfalls to be avoided when analysing qualitative data. Member checks were

performed with interviewees to verify the researchers’ interpretation of responses obtained in the

interviews. Furthermore, in-depth interviews are only feasible with small numbers and therefore

possess limited representativeness. The process is also labour intensive, time consuming and

expensive.

3.13 Ethical Considerations

Ethical standards were adhered to throughout this research project. Issues of importance

including beneficence, sensitivity, human dignity, human justice and respect for persons

permeated all aspects of the research process (Polit and Hungler, 1991; Cormack, 1996, Parahoo,

1997). Written consent was obtained from respondents (Appendix 3.13) and explicit assurance

was given in relation to their right to withdraw from the process at any time. The application of

ethical principles was outlined in the letters sent to respondents prior to the commencement of

the study. In addition to the personalised letters, the researcher set out a weekly timeframe during

which potential respondents were invited to seek any information or assistance if required.

Ethical approval for the study was sought and obtained from both the South Eastern Health

Board and University of Ulster (Appendix 3.14).

Respondents have the right to expect that any information they provide will be treated in

confidence (Bell, 1991). Therefore, issues regarding privacy, confidentiality, and the disclosure

of potentially sensitive information were discussed with individual carers prior to

commencement of the interviews. The anonymity of respondents was protected and maintained

by the allocation of a respondent number. However, the nature of the interview or focus group

approach is such that true anonymity cannot be assured.

31

Parahoo (1997) cautions that a one-to-one interview may have the effect of altering participants’

perspectives and raising their expectations (Parahoo, 1997). In the present study, carers spoke

openly and freely about intimate issues and experiences of care-giving. The course of this

interaction may be evidenced in the audiotapes and transcripts (Appendix 3.15). The need to be

sensitive to participants' feelings both during and following completion of the interview process

is important (Smith, 1995). The responsibilities of the researcher extended to providing comfort,

support and advise (Reed and Proctor, 1995). This is particularly relevant where the researcher is

a nurse.

Three £50 prizes were offered in a raffle to respondents as a token of gratitude for completing

the questionnaire. It was thought that this might also enhance the response rate.

32

CHAPTER FOUR

4.0 Introduction

This chapter includes a presentation and discussion of the findings of the focus groups, outlined

in chapter three. Overall themes identified focused on carers needs and experiences, attitudes

and perceptions, levels of user involvement and appraisal of service adequacy and efficacy.

4.1 Encapsulating the Totality of the Care-Giving Experience

Participants in the course of all three focus groups cogently expressed the totality of the caring

role and the overwhelming effects this may have on carers’ lives. One carer in focus group one

FG 1, described her role as "a labour of love " which was "constant" in nature, stating that:

"It never goes out of your mind, you never sleep, you never relax.”

Another carer in his late seventies in FG3, described the intensity of his role in caring for his

wife; who was suffering from Alzheimer’s’ disease:

" I have to do everything…all day long, day and night. I can't get a decent sleep. I have to

be awake at the drop of a hat. She gets out of bed and she roams around. In case she goes

astray in the night, I have to be there ".

A participant in FG1, who was caring for her mother with Alzheimer's disease, summed up the

impact of cognitive and behavioural changes on their relationship:

"The saddest thing about it is that a mother that you've loved to bits all your life and …

because you're the one spending so much time with her, you are ending up at

loggerheads, because there's great personality changes…it's not the person there

anymore and you are not the person you were anymore, because you never argue with

your mother, but patience runs out and you are pushed to the max”.

Previous studies identified the correlation between the degree of carer stress and strain and

deterioration in the care recipients’ state (Livingstone et al 1996). Clearly, the intensity and

33

duration of psychological strain are closely linked with an individual’s ability to cope with

inordinate emotional stress.

4.2 Responsibilities for Care-giving

In the current study, carers across all focus groups felt that ultimately the burden of responsibility

for caring lay with the family, primarily female members. A carer in FG1 illustrated this point

stating:

"it is the families responsibility up to a point, but I mean there has to be some help lined

out".

Yet another participant in this focus group was annoyed with what she perceived as the

inadequacy of the statutory services stating:

“They [the statutory services] want to put more care on the family, and yet there is no

facilities there for the family…the government have to take some responsibility, they have

to help out.”

A carer in FG2 highlighted the fact that in many cases the families are no longer available or

willing in some instances; to provide care and stated:

“They do stress all the time on the family, they do say they have to be there, and they are

not there.”

Another young carer in FG1, proposed that informal care-giving should be called 'payback time',

commenting that:

"Your parents gave everything for you and I think in turn all the family should pull

together. I think that would make it easier".

There is certainly previous evidence reporting that family support for older people remains as

strong and as effective as ever (Sundstrom, 1994). In the current study, the loyalty and

compassion expressed by many carers for the older persons in their care was quite remarkable,

34

with many examples of utter selflessness and dedication to their caring role. One carer in FG3,

summed up her commitment to caring for her mother as follows:

"I'd be very reluctant to let her into a home, it would have to come to the stage that

literally my health would go".

4.2.1 Psychosocial Sequalae: Therapeutic Effects of Focus Groups

Previous researchers have noted the therapeutic element of focus groups (Gale, 1992). A

considerable number of participants commented on the supportive nature of the focus groups and

suggested that it would be useful:

"if there was more meetings, just meetings to share with one another,"FG3.

Many of the participants thanked the researcher for affording them the opportunity to express

their experiences and difficulties through interaction with other carers. Some of the carers

exchanged information and advice. One carer in FG3, suggested:

"We should set up our own support, so that someone could step in and take the strain".

4.2.2 General Health Issues

A significant proportion of participants asserted that their personal health and social wellbeing

had deteriorated as a direct result of the care-giving experience. One carer in FG1, summed up

the these changes as follows:

"Slowly but surely, you see your own physical health and radiance going out of yourself,

which is minor, but it is probably major to maybe your husband. The spark goes out of

you, you just get drained slowly."

This carer went on to state that this comment was "not a complaint…just a plea from the heart of

the story of carers".

Carers described changes in their psychological health as being considerably more profound than

any other aspect of their overall health. Previous research evidence suggests that carers,

35

particularly spouses of frail older people at home experience considerable psychological distress

(Buck et al 1997). A participant in his seventies, in FG3, described the impact of stress and

sleeplessness stating how:

"There is only so much that you can take…there are times when people will snap…as you

get older what tolerance do you have to deal with problems like that...up all night.

Sometimes I blow up and let off steam. I hate to say it but sometimes I really blow up on

her…. You can only take so much. You can't be the nice fella the whole time, there is no

way, no way. "

A fellow carer, also within FG3; concurred with these experiences, suggesting that:

"It’s stress, that's what it is, you can't cope…. and it's day and night, every day and every

night for years, you know. "

In the same way, a daughter in FG1 caring for her mother with Alzheimer's disease, related how

the intensity of her role was such that she had a baby monitor plugged in all the time, and made

the following comments

"It nearly drove me mad. She'd call me every night at the same time, it was the confusion,

the head swinging and the face snapping and glaring. The same thing night in, night out.

You just end up cracking up yourself".

4.2.3 Dependency and Interdependency

A considerable number of carers expressed feelings of guilt regarding respite care intimating that

respite services were just not an option. A carer in FG2, explained that when she did go on a

holiday after caring for her mother for almost twenty years, she received phone calls from her

mother where

“she was giving out, saying that she was getting depressed, I should have stayed at

home”.

36

One woman in FG1, who was caring for her highly dependent mother, illustrated the extent of

her sense of responsibility for her mother; explained how leaving her mother in a respite service

left her feeling that she had abandoned her stating how

“People try to say to switch off, but how do you leave somebody you have loved all your

life? I just couldn’t turn my back on her .”

4.2.4 Support Systems

In the present study, there were many references to carers reliance on informal supports,

primarily family, friends and voluntary agencies. In some instances, this was due to a lack of

awareness and information among carers regarding accessing and obtaining essential services, as

well as dependency factors that rendered the care recipient unwilling to avail of services.

Previous researchers have identified the need to evaluate methods of dissemination of knowledge

to carers and evaluate their effectiveness (Coope et al 1995, Graham et al 1997). A participant in

FG2 emphasised the need for "a home help- you need backup."

Groups felt that in order to enable the valuable work of the voluntary agencies to be extended

and expanded, the government should provide support and assistance.

As one carer in FG3 put it:

"The real big help is the day-care…it's a help, brilliant. Extend the day care if it's

possible".

All the carers in FG3 praised the work of the Alzheimer’s’ day care services as a source of

respite care, information and education. Previous studies, found that carers of older people

suffering from dementia made significantly greater use of day-care services (Philp et al 1995).

They were also the most knowledgeable when compared with carers that had been in contact

with statutory mental health services and those who had no prior contact with any care agency

(Graham et al 1997) One aged carer, in FG3 commented that:

"It is a blessing when they come along with the van [The Alzheimer's Association] and

take her off. The minute they are gone I go back up and lie down for another two hours

and I get a peaceful sleep."

37

4.2.5 The Significance of Respite Services

Interestingly, psychological sequalae and the need for day-care and respite services were found

to be interlinked in the current study. As one carer in FG1explained:

"Now the respite help is being offered to us this year, and we’re going to whether we

want to or not, we have to take it because we just can't cope any longer. Were going to

take it because we are at the end of our tether".

However, this carer expressed a common phenomenon amongst other focus group members

pertaining to feelings of guilt regarding accepting respite care:

"We were just thinking, you see if she dies, you see it never goes away, after all our care

to try and keep her happy that if she got in such a state and died, we would never forgive

ourselves and that's the other end of it. You spend your whole life giving and then will

you spend your whole life if she died in that situation bearing guilt like”

Another carer in FG1, caring for her blind mother with Alzheimer’s disease emphasised her

plight in quite profound terms stating that:

“There is a definite need for a break for people. You have to be a prisoner in your own

home, day and night and you cannot leave until somebody comes to relieve you. I don’t

really think that if you are to live a normal life at all, you could be expected to exist like

that whether you are 70, 35 or whatever. You had to get out the door and go because that

was like your freedom. It's’ like leaving a bird out of the cage.”

A daughter caring for her frail aged mother, in FG3 echoed the need for support to combat an

intense sense of isolation stressing that:

“You need to have somebody in the house with you. To be there, to help you along the

way. Even if you had somebody coming in for a few hours a day. You are so alone.”

A daughter caring for her frail aged mother summed up the benefits of the carer obtaining some

form of respite:

38

"The more breaks you get, the more stamina and the fresher outlook on the whole thing,

to go back to a person and be fresh…if it's just ongoing it's, you're dragged down."

4.3 Economic Issues

Numerous carers believed that the benefits and allowances available were grossly inadequate to

cover the underestimated economic costs of caring for an older person. A considerable lack of

awareness and knowledge of financial benefits and entitlements was evidenced across all focus

groups. One aged carer, who had been caring for his wife for many years, referred to the carers

allowance stating:

"I never heard that word said, I don't know nothing about that."

A common experience that emerged across all the discussion groups was a scenario whereby

carers often obtained information regarding benefits such as the carers allowance by chance or

on the advise of a fellow carer, friend or family member. A carer in FG1, caring for her mother

stated that:

"There shouldn't be such a tight reign on the carers allowance because it would enable

you to pay some help as well…it's costing a lot , heating is a major problem with an old

person. If you were getting a carers allowance, you could say, well I could put that to

some paid help."

A carer in FG2 described how her employment opportunities had been curtailed since engaging

in caring for her mother stating she

“…was working full time, but now I have had to cut my work down to two days".

This highlights the potential impact that such issues may exact on the carers’ economic status,

social life, emotional wellbeing and overall quality of life.

39

4.4 Family Dynamics

Many carers referred to the fact that the caring role was often left to one member of the family,

often a female carer. A carer in FG1, explained how although there were ten siblings in her

family:

"It just doesn't work out that way when it comes to helping. People switch off. It's a

terrible strain when it comes to one person", unfortunately, you are let down by family

members, who won't give the time or the money".

Another participant in this group concurred with these assertions stating:

"It is always left to one at the end".

A carer in FG1, caring for her mother who was suffering from Alzheimer's disease explained the

impact multiple caring roles:

"I don't think for a person with their husband and child, I really don't think it's possible

to include an aged parent that is in that condition without something snapping

somewhere".

Furthermore, a carer in FG2 caring for her school-going children as well as her frail father stated

that her role in caring for her father

"...does affect the whole family ".

This point emphasises the importance of considering the rational elements of care-giving as well

as the inherent tasks, in order to hear and understand carers concerns (Kellett, 1996). As one

carer in FG2 put it:

"It is not only what you are doing, take time and listen to them, because they really want

to talk".

This finding was echoed by other group members and across other focus groups.

40

4.5 Service Information for Carers

Some carers related feeling of frustration and hopelessness in relation to attempting to access and

receive services. A carer in FG2 who was caring for her father following a stroke stated:

"…that no one gives you any information for one thing", even if you are entitled to

something, you have to go through so much I’d say to even get something.”

A fellow carer in the same focus group proclaimed that:

“If you don't know what you're entitled to, you have no hope at all of getting it", adding

that:" there should be an information leaflet for everybody caring for the aged."

Similarly, carers across other groups reported that they often did not know who to ask or what to

ask for. A previous longitudinal study of carers of demented and non-demented older people

found that they needed to be facilitated in seeking help and support (Gafstrom and Winblad,

1995). A recent Irish study, Jennings et al (1997) identified the need for primary healthcare

practitioners to become more active in their role as informants and facilitators of support services

for carers.

A carer in FG3 suggested that:

"The Health Board need to promote themselves, their information, I mean they’re a

Government body and should be either going through Eirtell on the television and the

media, there should be publications, they have books out there, there should be somebody

there, if you have a problem, that you could go and sit down and talk to them".

4.6 Appraising the Adequacy and Efficacy of Services

McBride (1995) highlighted the importance of standards of care in discharge planning between

institutional and community nursing services. A carer in FG3, contended that:

"The government doesn't seem to care. They are not providing enough. There would

want to be more and more people in the Health Board."

41

Carers, across different focus groups; described the management of services for carers as a

process of "crisis management" arising from restrictive eligibility criteria. A participant in FG3,

caring for his wife who was suffering from Alzheimer's disease, emphasised that in order to get

any help:

" the situation has to reach crisis, that's the main thing, that would be my gripe at the

moment".

Previous studies report a tendency amongst carers to only seek supportive services when they are

unavailable to continue care-giving or can no longer sustain the strain of care provision

(Nankervis et al 1997, Dello Buono et al 1999). Indeed, a carer in FG3, described the plight of

her mother who was looking after her father, and stressed the reactive nature of community

statutory service interventions, stating:

"When my mother got sick…then the nurse came, and then they got her home help,

somebody to come in and bath my father, twice a week, but she [the main carer] had to

get sick before that happened, that is the biggest point that I want to make, we will have

all sorts of problems then because we will have two sick people".

A carer referring to the need to assess the carer proposed that:

"The whole situation should change, people should be coming to the house, they should

be checking on the carers as well as the patient you know…see how the carer is doing,

what needs to be done from here, what is going to need to be done in two months time.

They should take into consideration their age, what are they on, how are they going. They

are no longer young".

Another carer in FG3 referred specifically to the need for service monitoring, suggesting the

importance of statutory service providers:

"Who look at the need of people and not just now, but in six months time… Can they

[carers] manage in six months time, in twelve months time, what is the situation going to

be and give the feedback to someone…they should know the duration of the patient and

start preparing the family then for what's coming, not waiting 'till the day…"

42

Another carer in FG1, was of the opinion that service shortages and follow up care in the

community stemmed from a lack of financial resources, stating:

"I'm not running down the health board at all because they're stretched".

However, this carer asserted that some of the economic problems arose out of a poor distribution

of funds and could be curtailed if carers were given some financial incentives and supports to

enable them to sustain their carer role at home.

She concluded that:

"The Health Board, I know there are tight reigns on their money, but think of the amount

of people it's keeping out of hospital [ home care] and what it would cost a person. It's

costing them nothing for her to be sitting at home, but yet they refuse the very small

minimum [the Carers Allowance] it's like a vicious circle. If they don't help you in the

initial stages, it's going to cost them in the long run."

4.7 Education and Training Issues

Implications for the provision of services by carers in regard to the need for education, training,

supervision and support have been evidenced (Wardell and Chesson, 1998). A considerable lack

of training for carers in relation to lifting and handling older people was identified. Moreover,

there was no evidence of any agreed service standards, accreditation, regulation or monitoring

procedures. Concerns were also voiced in regard to a lack of communication, monitoring and

support for carers, from the relevant professionals where new or altered medication had been

introduced.

A carer in FG1, whose mother was blind and living with poorly controlled diabetes mellitus,

expressed serious concerns about the lack of information and support for carers trying to

administer medication. She expressed the view that the health care services for older people

living at home are such that:

43

"You are left with the responsibility…really at the end of the day there is nobody there to

help, and at the end of the day, you are there on your own … you had to go and look for

things yourself, you need somebody to take control of the medical end of things, you know

the drugs."

4.8 The Physical Components of Care-giving

A number of carers referred to the fact that many carers do not possess the physical skills and

capacities necessary to undertake certain aspects of the caring role. Many were unsure as to how

to access supportive equipment and appliances. One aged carer in FG3 caring for his wife, who

was suffering from Alzheimer's disease, explained that he received no help from the statutory

services, commenting:

"I'm the one who's on tablets. I'm nearly crippled".

No members of any discussion group reported ever having received a physical assessment of the

home care environment, or any structural modifications to the home to facilitate caring. A carer

in FG3, looking after her mother commented that:

"Old people should be supplied with a shower with a seat…devices anything that makes

life easier."

A male carer in FG3, caring for his mother commented that without help:

"The hygiene problem… is at times very awkward".

4.9 The Positive Dimensions of Caring

A daughter, commenting on caring for her father related how important it was to her to have

been afforded the opportunity to care for somebody she was very close to, stating:

“I did what I would like someone to do for me and it was very fulfilling. I felt it was

closeness, and when he died, I said well you did your best for me and I have done that for

you. So, that was comfort for me and I wouldn’t change it”.

44

This carer went on to convey the comfort she derived from her role in caring for her parents,

while assuring a fellow carer who was caring for her father:

" You will always say to the day you die I have given him the most precious thing and that

is my time".

4.10 Conclusion

A diverse range of needs and experiences were related in the course of these focus groups. The

magnitude and complexity of carers' roles and responsibilities is clearly illustrated. These

contentions portray clearly the importance of exploring and responding to defined gaps in health

and social care services to support rather that militate against the maintenance of informal care-

giving. The findings support the thesis that we cannot lightly refute the possibility that:

‘We are in danger of needing more and more ambulances downstream to fish people out

of the river for want of fences upstream to stop them falling in' (Harding, 1997).

45

CHAPTER FIVE

5.0 Introduction

The results of the main study and a discussion of its findings are presented in this chapter.

Survey data were collected between mid November 1999 and mid February 2000. A total of 215

completed questionnaires were returned out of a total of 319, representing a response rate of

69%. This study was undertaken during a period of considerable industrial unrest in Irish

nursing, which culminated in strike action. Given the impact of these issues on the distribution

mechanism coupled with the significant workload of many carers, this was considered a

reasonably acceptable response rate.

Section One: Presentation of Questionnaire Data

5.1 Socio-Demographic Details of Carers

Carers in this study were drawn from a wide geographical spread representative of carers residing in

rural (54.2%) and urban (45.8%) areas. In relation to gender, almost three-quarters of carers

identified were female. 71.2% (n=153) were female and 28.8 % (n=62) were male.

Table 5.1: Carers’ Age

Description Frequency Valid Percent Cumulative Percent

20-30 years

31-40 years

41-50 years

51-60 years

61-70 years

over 70 years

5

19

50

61

39

41

2.3

8.8

23.3

28.4

18.1

19.1

2.3

11.2

34.4

62.8

80.9

100.00

Total 215 100

It can be observed from Table 5.1, that almost 20% of carers are over the age of 70 years, 37%

over the age of 60, and 65% are over the age of 50 years. Thus, consistent with previous studies

detailed in chapter two, a significant number of carers were older persons themselves. A small

minorities of carers, 2.3% were aged between twenty and thirty years while most carers in the

46

study were aged between fifty-one and sixty years (28.4%). The mean age of carers was

estimated at 56 years (range=20-70+years).

Table 5.2: Identifying Carer/Care Recipient Relationships

Description Frequency Valid Percent Cumulative PercentCarers caring for a parent/ parent-in-law

Carers caring for a spouse

Caring for an aunt/uncle

Sister/Brother

Brother/Sister-in-law

Neighbour/Friend

Granddaughter

121

48

16

15

5

6

2

56.8

22.5

7.4

7.1

2.4

2.8

0.9

56.8

79.3

86.7

93.8

96.2

99.0

99.9Total 213 100

As indicated in Table 5.2, 56.8% of principal carers were caring for a parent, and 35.2% of the

main carers were daughters. This confirms the carer profile portrayed in numerous other studies

where the caregiver role traditionally fell upon female family members. While 22.5% of carers

were caring for a spouse, other family members were also engaged in the care-giving role. In

general, care-giving lay within the domain of one family member.

Table 5.3: Number of Carers Co-Residing with the Older Person, by Age (N=215)

What age are you?

Do you live in the same household as the older person / persons you care for?

Yes No20 – 30 Years 5 031 – 40 Years 15 441 – 50 Years 34 1651 – 60 Years 43 1861 – 70 Years 34 5Over 70 Years 38 3

47

Table 5.3 above shows that at the time of the survey 78.6% (n =169) of the sample were living in

the same household as the older person. Older carers, particularly males were found to be more

likely to be living with the care recipient.

5.2 Extent of Care-giving Relationships and Responsibilities

Figure 5.1 below, shows that only 10 (4.7%) of respondents had been a carer for less than a year,

while 34 (15.8%) of the total sample reported care-giving for twenty years or more (range I-20

years+). Most of the carers (26.5%) n=57, reported engaging in the care-giving role for greater than

five but less than ten years.

Figure 5.1: The Number of Years Spent Caring (N=214)

48

How long have you been a carer?

Cou

nt

60

50

40

30

20

10

0

34

45

5754

15

10

Table 5.4: The number of older people being cared for by each carer (N=214)

What Age are you?

How many people over 65 years do you care for?

1 2 3 4

20 – 30 Years 4 1 0 0

31 – 40 Years 18 1 0 0

41 – 50 Years 39 10 0 1

51 – 60 Years 53 4 1 0

61 – 70 Years 36 3 0 0

Over 70 Years 39 2 0 0

Table 5.4 above, illustrates that a significant majority of carers (88.3%: n=189) engage in the

care of one older person while (11.7%) indicated that they cared for two or more people. Those

caring for one or more person tended to be in middle or old age themselves. A further 23.3% had

other care-giving responsibilities as mothers of school-going children, housewives and carers of

chronically ill children or adults.

Table 5.5: Carers’ Time Spent Providing Care Daily

Description Frequency Valid Percent Cumulative Percent

Carers’ time spent providing care daily:

0-3 Hours4-8 Hours9-15 Hours16-24 Hours

374232102

17.419.715.047.9

17.437.152.1

100.00Total 213 100

As illustrated in Table 5.5, the average time spent care-giving was between 16 and 24 hours daily

(47.9%) or less providing care supporting previous studies that reported care-giving as a twenty

four-hour job (see chapter 2). Only 17.4% reported spending three hours or less.

49

Table 5.6: Overnight Care Provided by Carers

Description Frequency Valid Percent Cumulative Percent

Provision of overnight care:

1 -3 Times nightly4 -6 Times nightly> 6 Times nightly

Sometimes

881173

80.410.36.52.8

80.490.797.2

100.00Total 109 100

Table 5.6 shows that more than half the sample (50.5%) reported providing care overnight with

80.4% reported having to get up 1-3 times nightly while 16.8% reported having to get up more often

to provide care.

Table 5.7: The Extent of Care-Giving as Expressed Weekly

Description Frequency Valid Percent Cumulative Percent

Provision of daily care:

4 Week days or less

All seven days

24

190

11.2

88.8

11.2

100.00

Total 214 100

Table 5.7 shows that 88.8% of respondents reported providing care across all seven days of the

week, illustrating the continuous nature of the carers’ role.

Table 5.8 below, profiles the many labour intensive dimensions of the care-giving role,

illustrating the diversity and intensity of some of its many components. These aspects of care-

giving are based on an activity of living model and are by no means all-inclusive.

50

Table 5.8: Number of Carers Spending Time Engaged in Activities of Daily Living

Number of Carers engaged in each activity

None 1-6 hours

7-12 hours

13-18 hours

19-24 hours

Washing and bathing 94 105 3 1 6Dressing 110 90 3 1 7Eating and drinking 137 57 4 1 7Cooking 48 138 13 4 8Toileting 123 67 4 3 9Lifting and moving 118 71 6 5 8Incontinence 130 57 4 4 10Medication 56 132 12 1 8Household tasks 35 133 21 6 14Shopping 33 156 6 3 10Personal safety 35 107 19 10 37

Through open-ended questionnaire items, many carers expressed key concerns, which lay within

the following areas:

A lack of official acknowledgement regarding the financial impact of care-giving;

Difficulty in obtaining the carers allowance despite carers needs;

Deterioration in their quality of life, as a result of care-giving;

Deterioration in the older persons physical and psychological state;

Concerns regarding future coping strategies as the dependency of the older person increases;

Issues surrounding the aged profile of carers themselves;

Carers and older people living in poor social conditions;

Social isolation, and an associated lack of independence;

Issues surrounding loneliness and a lack of social interaction;

A lack of practical support services, particularly home helps and home care attendants;

The lack of flexibility and continuity in terms of day-care and respite care, since care-giving

is a twenty four hour job;

51

5.3 Carers in the Formal Workplace

Tables 5.9 shows that 33.5% of carers were also engaged in employment outside the home. A

further 37.7% indicated that they would like to be in paid employment while 20.3% stated that

they had given up paid employment to engage in care-giving responsibilities.

Table 5.9: Carers’ Work Profile

Description Frequency Valid Percent Cumulative Percent

Full-time paid employment

Part-time paid employment

Work in the home only

26

24

164

12.1

11.2

76.6

12.1

23.4

100.00

Total 214 100If not, would you like to be in paid employment?

YesNo

63104

37.762.3

37.7100.00

Total 167 100Did you give up paid employment to become a carer?

YesNo

43169

20.379.7

20.3100.00

Total 212 100

5.4 Responsibilities for Care-giving

Table 5.10 shows that 77.7% of the sample felt that caring for the older person was primarily the

responsibility of both the family and the Health Board collectively. Some 19.1% believed that

this responsibility rested with the family alone, while only 3.3% of respondents indicated that the

responsibility rested solely with the Health Board. Of considerable significance was the

consistent evidence suggesting that 93.8% of carers feel that the Department of Health should do

more for the carers of older people.

52

Table 5.10: Responsibilities for Care-giving

Description Frequency Valid Percent

Cumulative Percent

Do you believe that caring for the older person is primarily the responsibility of:

Family?Health Board?

Both?

417

167

19.13.377.7

19.122.3

100.00

Total 215 100Do you feel the Department of Health should do more for the carers of older people?

Yes No

19712

93.85.7

93.899.5

Total 210 100

5.5 Health Profile of Carers

More than half of the total sample reported that they worried about their present health (53.3%

n=114), while 70.3% (n=149) expressed concerns regarding their future health. Furthermore,

more than two thirds of respondents, 68% (n=138) stated that they worried about becoming

unwell and unable to continue as a carer, while 26.6% (n=57) indicated that they did not usually

have enough energy to fulfil their role as a carer. Additionally, 24.3% (n=52) reported that they

did not get enough sleep to meet their own needs. A total of 25.7% (n=55) indicated that they

did not find life satisfying, while 30% (n=64) no longer felt cared for as a person. 55.1% (n=118)

related a deterioration in their social life since undertaking the care-giving role.

53

Table 5.11: Carers’ Perceptions of their Physical and Emotional Health

Description Frequency Valid Percent

Cumulative Percent

How would you describe your physical

health before becoming a carer?

Very Good

Good

Fair

Poor

Very Poor

97.0

81.0

34.0

2.0

0.0

45.3

37.9

15.9

0.9

0.0

45.3

83.2

99.1

100

100

Total 214 100How would you describe your physical

health since becoming a carer?

Very Good

Good

Fair

Poor

Very Poor

47.0

74.0

71.0

17.0

4.0

22.1

34.7

33.3

8.0

1.9

22.1

56.8

90.1

98.1

100

Total 213 100How would you describe your emotional

health before becoming a carer?

Very Good

Good

Fair

Poor

Very Poor

87.0

104.0

23.0

0.0

0.0

40.7

48.6

10.7

0.0

0.0

40.7

89.3

100

100

100

Total 214 100How would you describe your emotional

health since becoming a carer?

Very Good

Good

Fair

Poor

Very Poor

41.0

87.0

64.0

10.0

12.0

19.2

40.7

29.9

4.7

5.6

19.2

59.8

89.7

94.4

100

Total 214 100

54

As illustrated in Table 5.11, a significant proportion of carers reported deterioration in their

physical health since partaking in the care-giving role. While 83.2% described their physical

health as very good (45.3%) or good (37.9%) prior to becoming a carer, only 56.8% collectively

reported the same positive expressions of physical health since becoming a carer. Moreover,

89.3% expressed their emotional health as very good (40.7%) or good (48.6%) before becoming

a carer; these figures fell to 19.2% and 40.7% respectively (59.9% collectively) following

engagement in the care-giving role, suggesting a significant deterioration in carers’

psychological wellbeing. While carers’ expressions of poor or very poor physical or emotional

health were almost non-existent prior to becoming a carer, carers perceived their physical health

as poor (8%) or very poor (1.9%) since becoming a carer. Some carers also perceived their

emotional health as poor (4.7%) or very poor 5.6% since becoming a carer.

It can be observed from Table 5.12, that 68.6% of the sample reported that they relied on past

experiences to help them cope with their care-giving role, while 66.0% were of the opinion that

they coped better when they reflected upon good times they shared with the care recipient in the

past. Similarly, three quarters of respondents (75.0%) believed that the good parts of caring

enabled them to cope with their role. Half the sample (48.7%) were of the opinion that more

information and training in relation to their role would enable them to cope. Furthermore, in

order to cope 51.0% felt the need to discuss their problems as a carer. A sizeable majority 77.9%

(n=166) felt that religious / spiritual beliefs helped them to cope with their care-giving role.

55

Table 5.12: Coping Strategies Adopted by Carers

Description Frequency Valid Percent Cumulative PercentI rely on past experiences to help me copeStrongly AgreeAgreeNeither Agree nor DisagreeDisagreeStrongly Disagree

3110932266.0

15.253.415.712.72.9

15.268.684.397.1100

Total 204 100I cope better when I reflect on good times I had in the past with the person I care forStrongly AgreeAgreeNeither Agree nor DisagreeDisagreeStrongly Disagree

2811238223.0

13.855.218.710.81.5

13.869.087.798.5100

Total 203 100The good parts of caring help me to copeStrongly AgreeAgreeNeither Agree nor DisagreeDisagreeStrongly Disagree

2212933137.0

10.863.216.26.43.4

10.874.090.296.6100

Total 204 100If I had more information and training for this role, I feel I could cope betterStrongly AgreeAgreeNeither Agree nor DisagreeDisagreeStrongly Disagree

237650486.0

11.337.424.623.63.0

11.348.873.497.0100

Total 203 100I need someone to discuss my problems as a carer, in order to copeStrongly AgreeAgreeNeither Agree nor DisagreeDisagreeStrongly Disagree

287533579.0

13.937.116.328.24.5

13.951.067.395.5100

Total 202 100

As illustrated in Table 5.13, a total of 95% (n=303) of respondents described their past

relationship with the care recipient as very good (76.2%) or good (18.7%), while 77.7% (n=185)

described their current relationship with the person they care for as very good (65.4%) or good

(22.3%). Although, 3.7% described their past relationship as fair, poor or very poor (1%) some

10.9% expressed their current relationship as fair or poor 0.9%. Therefore, some deterioration in

the carer / care recipient relationship was noted following engagement in the care-giving role.

56

Table 5.13: Profiling Carer/Care Recipient Relationships

Description Frequency Valid Percent Cumulative PercentHow would you describe your PAST relationship with the person you care for?Very GoodGoodFairPoorVery Poor

163.040.08.01.01.0

76.218.73.70.50.5

96.294.998.699.199.5

Total 214 100How would you describe your CURRENT relationship with the person you care for?Very GoodGoodFairPoorVery Poor

138.047.023.02.00.0

65.422.310.90.90.0

65.487.798.699.5100

Total 211 100

5.6 Health Profile and Age of the Care Recipient

74.6% of older people suffered from general health related conditions, while 25.4% were known to

have varying degrees of mental infirmity ranging from Alzheimer’s disease to differing forms of

dementia, confusional states and functional depression. Although 8.2% were known to be caring

for a mentally infirm person on commencement of the study, on analysing the health profile of the

total sample, a further 17.2% were identified.

Figure 5.2: The Number of Older People Suffering from Periods of Confusion

57

Does the person suffer from any periods of confusion?

NeverOccasionallyFrequently

Perc

ent %

50

40

30

20

10

0

30

47

23

As illustrated in Figure 5.2 above, 70.3% of carers stated that the older person experienced

periods of confusion, (23.3%) frequently and (47.0%) occasionally. Figure 5.3 below, shows

that the average age of the care recipients lay between 81 and 85 years (27.2%), with an age

range of between 65 and 102 years. This is consistent with previous research (see chapter 2)

evidencing the increasing longevity of older people.

Figure 5.3: The Age of the Care Recipient

5.7 Economic and Practical Assistance with Care-giving

82.8% (N=178) of carers indicated that they were not in receipt of the carers’ allowance, while

89.9% did not endorse the means testing of the carers’ allowance. Although 38.5% (n=82)

related experiencing financial worries that resulted from providing home care, only 13.1% of the

sample reported experiencing concerns about their pension as a consequence of having given up

paid employment to become a carer.

As indicated in Tables 5.14 and 5.15, (80.6%) are not receiving the support of a home help or

home care attendant (87.7%). Furthermore, many carers who do receive these support services

receive very few hours weekly. Several carers reported that they supplemented the payment

which the home help / home care attendant received, expressing the view that the payment rates

were too low to attract or maintain these support personnel. In addition, carers expressed

58

dissatisfaction with the lack of these support services at night or at weekends, particularly where

the older person required high levels of care-giving interventions.

Table 5.14: Carers Receiving Home Help Expressed in Hours Per Week (n=201)

Description Frequency Valid Percent Cumulative Percent

None1-2 Hours3-4 Hours5-6 Hours7-8 Hours9-10 Hours

Over 10 Hours

1628.07.06.05.04.09.0

80.64.03.53.02.52.04.5

80.684.688.191.093.595.5

100.00Total 201 100

Table 5.15: Carers Receiving Home Care Assistance Expressed in Hours Per Week (n=195)

Description Frequency Valid Percent Cumulative Percent

None

1-2 Hours

3-4 Hours

5-6 Hours

7-8 Hours

Over 10 Hours

171

7.0

7.0

3.0

3.0

4.0

87.7

3.6

3.6

1.5

1.5

2.1

87.7

91.3

94.9

96.4

97.9

100.00

Total 195 100

As shown below in Table 5.16, 45.8% of the sample claimed to need the assistance of a home

help, while a further 37.4% claimed to require the services of a home care attendant.

59

Table 5.16: Carers Expression of their Need for Access to Support Services

Description Frequency Valid Percent Cumulative Percent

Do you feel you need the assistance of a home help?

YesNo

98116

45.854.2

45.8100.00

Total 214 100Do you feel you need the assistance of a home help?

YesNo

80134

37.462.2

45.8100.00

Total 214 100

With regard to other support networks, it can be seen in Table 5.17 that 62.1% of carers

described the practical support and assistance they receive from family as very good (40.3%) or

good (21.8%). However, 11.8% described it as fair, while 3.8% indicated that family support

was poor or very poor (8.1%). Interestingly, 14.2% stated that they did not expect any practical

support from family. Similarly, 12.5% of carers did not expect practical support from

professionals/health services. Although those in receipt of practical support from professional

health service agents described it as very good (27.9%) or good (31.3%); 16.3% felt that this

service was fair, poor (6.3%) or very poor (5.8%). In addition, 66% stated that they did not

expect voluntary bodies to provide practical support. In relation to friends and neighbours,

40.6% of respondents claimed that they did not expect any support or assistance from them.

However, those in receipt of practical support from friends and neighbours (59.4%) described it

as very good (17.4%) or good 21.3%.

60

Table 5.17: Sources of Practical Support and Assistance

Description Frequency Valid Percent

Cumulative Percent

FamilyGood / Very GoodFairPoor / Very PoorDon’t expect any support / assistance

131252530

62.111.811.814.2

62.173.985.8

100.00Total 211 100

Professionals/ Health ServicesGood / Very GoodFairPoor / Very PoorDon’t expect any support / assistance

131252530

59.216.312.112.5

59.275.587.6

100.00Total 208 100

Voluntary OrganisationsGood / Very GoodFairPoor / Very PoorDon’t expect any support / assistance

23639132

11.53.019.566.0

11.514.534.0

100.00Total 200 100

Friends/ NeighboursGood / Very GoodFairPoor / Very PoorDon’t expect any support / assistance

80232084

38.711.19.740.6

38.749.859.4

100.00Total 207 100

5.8 Sources of Information Regarding Support Services

Almost two-thirds (62.7%) of the sample reported that they did not receive enough information

about the availability of support services in their care-giving role. Table 5.18 below, illustrates

key sources identified regarding accessing relevant information about available services to

support the carers’ role. Primarily, information was sourced from public health nurses (77.9%)

family doctors (63.4%) and friends and neighbours (17.4%). Almost two thirds of respondents

indicated that this information was not obtained from community psychiatric nurses. With

regard to the information received from health care professionals, some carers expressed the

view that the public health nurse and the family doctor did not offer information voluntarily,

claiming that obtaining relevant information was generally initiated by the carers themselves, as

a reaction to a problem situation.

61

A total of 30% of carers reported upon the value of books, newspapers and magazines as a source of

information regarding accessing support services while others reported media such as radio,

(20.7%) television, (22.1%) or the internet (4.2%) as being instrumental in retrieving the necessary

information.

62

Table 5.18: Sources Identified as Providing Carers with Information about Relevant

Support Services

Description Frequency Valid Percent Cumulative Percent

DoctorYesNo

13578

63.436.6

63.4100.00

Total 213 100Community Psychiatric NurseAgreeDisagree

2133

38.961.1

38.9100.00

Total 54 100Public Health NurseYesNo

16647

77.922.1

77.9100.00

Total 213 100FamilyYesNo

69144

32.467.6

32.4100.00

Total 213 100Friends/NeighboursYesNo

37176

17.482.6

17.4100.00

Total 213 100FamilyYesNo

69144

32.467.6

32.4100.00

Total 213 100RadioYesNo

47166

22.177.9

22.1100.00

Total 213 100Books, Newspapers and magazinesYesNo

64149

3070

30100.00

Total 213 100TelevisionYesNo

47166

22.177.9

22.1100.00

Total 213 100InternetYesNo

9.0204

4.295.8

4.2100.00

Total 213 100

63

5.9 Carers Interaction with Health Care Professionals

As can be observed from Table 5.19 below, 59.1% of respondents reported that they received a

visit from the public health nurse at least monthly, while 8.6% claimed that they had never seen

him/her. Some 19% claimed that the public health nurse only called to them when asked to do

so. Although 25.4% of the overall sample was caring for a mentally infirm person, only 35.2%

indicated that were seen by a community psychiatric nurse, at varying intervals. A sizeable

number of carers (49.8%) reported that they only saw the family doctor when asked or needed.

Some 89.7% of participants stated that they had never seen an occupational therapist, social

worker (94.8%) or a physiotherapist (84.5%) in their home or at a clinic. Additionally, a

significant number of carers indicated that they had never met with a chiropodist (69%) or

counsellor (98.4%). However, of the 31% of the sample that reported having been seen by a

chiropodist, many stated that this was by private consultation.

Table 5.19: Carers Reported Interaction with Health Care Professionals

Description Frequency Valid Percent

Cumulative Percent

Meets the Public Health Nurse1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

3094270.04018

14.344.812.90.0

19.08.6

14.359.172.072.091.099.0

Total 213 100Meets the Community Psychiatric Nurse1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

1.012.04.00.02.035

1.922.27.40.03.7

64.8

1.924.131.531.535.2100

Total 54 100Meets the Family Doctor1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

2.064300.010611

0.930

14.10.05.2

49.8

0.930.94545

50.2100

Total 213 100

64

14/05/23 04:43

Table 5.19 (cont.): Carers Reported Interaction with Health Care Professionals

Description Frequency Valid Percent

Cumulative Percent

Meet the Social Worker1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

0.00.02.00.08.0183

0.00.01.00.04.1

94.8

0.00.01.01.05.199.9

Total 193 100Meet the Chiropodist1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

0.010.0180.034

138

0.05.09.00.0

17.069.0

0.05.014.014.031.0

100.00Total 200 100

Meets the Occupational Therapist1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

0.00.02.00.018.0

175.0

0.00.01.00.09.2

89.7

0.00.01.01.010.299.9

Total 195 100Meet the Counsellor1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

0.01.01.00.01.0190

0.00.50.50.00.5

98.4

0.00.51.01.01.599.9

Total 193 100Meet the Physiotherapist1-3 WeeklyMonthly2-6 Monthly9-12 MonthlyOnly when asked/neededNever

0.07.02.00.020

163

0.03.61.00.0

10.484.5

0.0-3.64.64.615.0

100.00Total 193 100

While 68.4% indicated that the healthcare professionals they interacted with understood carers’

specific health and social care needs, almost one third of the sample did not share this view.

Furthermore, 45.3% indicated that they would like more support from healthcare professionals.

65

14/05/23 04:43

Table 5.20:Professionals Carers Would Like More Support and Advice From

Description Frequency Valid Percent

Cumulative Percent

Which professionals would you like more support and advice from?Public Health NurseYesNo

43162

2179

21100.00

Total 205 100Community Psychiatric NurseYesNo

1232

22.277.8

22.2100.00

Total 44 100Occupational TherapistYesNo

22183

10.789.3

10.7100.00

Total 205 100PhysiotherapistYesNo

19186

9.390.7

9.3100

Total 205 100Social WorkerYesNo

18187

8.891.2

8.8100

Total 205 100DoctorYesNo

44161

21.578.5

21.5100

Total 205 100CounsellorYesNo

19186

9.390.7

9.3100

Total 205 100ChiropodistYesNo

30175

14.685.4

14.6100

Total 210 100

66

14/05/23 04:43

As shown in Table 5.20 above, nearly one fifth of respondents expressed a preference for further

support and advice from both public health and community psychiatric nurses. Interestingly,

evidence detailed in Table 5.19, illustrates that public health nurses interact with and support

carers more than any other health care agent. These findings are supported by data illustrated in

Table 5.18, where almost four fifths (77.9%) of carers identified public health nurses as key

health care professionals in the provision of adequate information for carers regarding relevant

support services.

Table 5.21: Professionals Reported as Providing the Most Valuable Contribution to Carers

Description Frequency Valid Percent Cumulative PercentPublic Health NurseYesNo

12769

64.835.2

64.8100

Total 196 100Family DoctorYesNo

90.0106

45.954.1

45.9100

Total 196 100Community Psychiatric NurseYesNo

13.037

26.074

26.0100

Total 50 100PhysiotherapistYesNo

4.0191

2.097.4

2.099.5

Total 195 100Social WorkerYesNo

3192

1.598

1.599.5

Total 195 100Occupational TherapistYesNo

5190

2.696.9

2.699.5

Total 196 100ChiropodistYesNo

11184

5.693.9

5.693.9

Total 195 100CounsellorYesNo

4191

297.4

299.4

Total 195 100

67

14/05/23 04:43

Table 5.21 above highlights health care professionals identified by carers as providing the most

valuable contribution in supporting carers. Public health nurses were seen as providing the

single most valued contribution to carers (64.8%). A further 45.9% indicated the value of the

family doctor in providing caregiver support. Interestingly, a quarter of respondents (26%)

specified the contribution of community psychiatric nurses. This may be explained by the fact

that only 35.2% reported meeting with a community psychiatric nurse, while 22.2% of carers of

mentally infirm persons expressed a preference for further support and advice from community

psychiatric nurses (see Table 5.19).

Table 5.22: Carers’ Perceptions of People There to Listen to Them

Description Frequency Valid Percent Cumulative PercentFamilyAgreeDisagree

15948

76.823.2

76.8100.00

Total 207 100Professionals / Health ServicesAgreeDisagree

15851

75.624.4

75.6100.00

Total 209 100Voluntary OrganisationsAgreeDisagree

36169

17.682.4

17.6100.00

Total 205 100Friends/NeighboursAgreeDisagree

106102

51.049.0

51.0100.00

Total 208 100

As shown in Table 5.22 carers felt that the people that are there to listen to them include family

(76.4%); professional / health services (75.6%); voluntary organisations (17.6%) and friends/

neighbours (51.0%). Therefore, nearly a quarter of respondents felt that neither professionals /

health service agents nor other family members were available to listen to them.

5.10 Respite and Day Care Services

68

14/05/23 04:43

66.7% of carers reported that they had never been offered respite care, while 32.6% (n=104) who

had been offered respite care did not avail of it. Although 58.9% (n=126) of respondents were

aware of day-care services only 13.1% (n=28) indicated that they availed of these services.

An open-ended questionnaire item revealed reasons that may be best illustrated by the following

carers’ experiences

“All outside help is refused and discouraged, (by the care recipient) neither or nurses or nuns

can persuade her; all have tried and failed”. (Carer no. 215)

“We live in a remote rural area.” (Carer no. 149)

“The problem of getting out, plus mobility problem…living in an isolated area.

“Don’t know of any Day-care services, nor have I been made aware of any….no transport.”

(Carer no. 181)

“Would not be able, as he is physically and mentally unwell”. (Carer no. 104)

“Unable to go out due to mental confusion”. ( Carer no. 1)

“Very independent and proud”. (Carer no. 95)

As shown in Table 5.23 below, 75.5% of respondents stated that they had received a break,

defined as a period of a week or more away from their care-giving role. Of those who reported

receiving a break, family (58.5%) and friends (22.3%) were cited as caring for the care recipient

in their absence. Approximately one third (36.8%) of respondents reported that they had

received a break in the proceeding 6 to 12 months. A further, 22.2% reported that they had not

received any break in the preceding 1 to 5 years, while 11.3% indicated that they had not

received a break for between 5 and 10 years. Interestingly, 5.2% reported not having had a break

in over 10 years, while a quarter (24.5%) of respondents related that they never had a break from

their care-giving role.

69

14/05/23 04:43

Table 5.23: Frequency of Breaks from the Care-Giving Role

Description Frequency Valid Percent

Cumulative Percent

How long is it since you had a break, lasting a week or more away from your care-giving

role?

Less than 6 monthsBetween 6 and 12 monthsBetween 1 and 5 yearsBetween 5 and 10 yearsOver ten yearsNever

572147241152

26.99.922.211.35.224.5

26.936.859.070.375.5100

Total 212 100

Table 5.24 below illustrates the respite services from which carers felt they would benefit.

Almost 44% of respondents indicated a preference for respite services provided for a few hours

weekly, on a regular basis. Many indicated a preference for in-home services. Almost one fifth

of respondents (18.5%) suggested that they could not avail of some respite services since the care

recipient wished to remain at home. This is consistent with carers’ comments in relation to the

poor uptake of day-care services. Many older people saw support services such as respite care as

a challenge to their independence. 13% of carers expressed a preference for day-care services in

the local community. However, a quarter of respondents expressed the view that they would

benefit from a week respite care twice yearly in a facility for the care of older people.

Table 5.24: Respite Services-Profiling Carers’ Perspectives

Description Frequency Valid Percent

Cumulative Percent

Which Respite Services would you benefit from if available?

A couple of hours a week on a regular basisDay-care facilities in the local communityOne week twice a year in a facility for the care of older people Wouldn’t go, only happy at home

8726

5337

43.513.0

26.518.5

43.556.5

83.0101.5

Total 200 100

Table 5.25 shows that 12.1% of carers claimed to experience transport problems in accessing

services aimed at supporting the care-giving role, a significant majority of carers (69.6%) stated

that they used their own private transport facilities in order to access necessary services.

70

14/05/23 04:43

Table 5.25: Transport Problems Associated with Accessing Support Services

Description Frequency Valid Percent Cumulative Percent

Do you experience transport problems in accessing services to support you in your caring role?

YesNo

Transport has to be provided by family/self

2639149

12.118.269.6

12.130.3

100.00

Total 214 100

71

14/05/23 04:43

5.11 Factor Analysis: Analysing Scale Reliability

The primary purpose of factor analysis was to reduce sets of Likert scale variables into smaller

more manageable sets of measures. In terms of concept development this procedure reduces

large sets of variables into smaller variable sets with common characteristics or underlying

dimensions (Polit and Hungler, 1991). These factors represent the weights on each factor and

were derived from inter-correlations in the correlation matrix.

5.11.1 Factor Analysis

Factor analysis, a multivariate statistical technique for assessing evidence of internal association

between sets of variables, is a powerful measurement assessment and measurement reliability

tool (Polit and Hungler, 1991). It is the most appropriate and commonly used inferential

statistical technique for assessing empirical evidence regarding internal consistency, association

and subsequent reliability (Zeller and Carmines, 1986). The use of the factor analysis model is

consistent with similar previous research by leading researchers in the field in the exploration of

issues such as carer burden (Nolan and Grant, 1992).

Factor frequencies are shown in Appendices 5.1 to 5.3. Interrelationships between the variables

underpinning each concept were identified and banded together as unified concepts. Following

this process of identifying underlying theoretical constructs, the following factors emerged:

loss of control,

self-fulfilment,

social isolation and loneliness.

Factor analysis was engaged in, as a process of establishing the discriminant validity of these

concepts. The factor loadings shown in Appendices 5.4 to 5.6 were condensed from larger

variable sets and extracted following computation from a rotated factor matrix, using the

Statistical Package for Social Sciences, (SPSS, 1997). Similar to correlation co-efficients, factor

loadings range from –1.00 to = +1.00 and represent the correlation between individual factors or

underlying dimensions (Polit and Hungler, 1991).

72

14/05/23 04:43

5.12 Reliability

Since the factor loading is analogous to a correlation coefficient, it can be inferred from Figures

6.19 to 6.21 that there are significantly strong factor / variable relationships. Thus, intercorrelations

amongst variables contained within the questionnaire responses were clarified. The repeatability

and consistency of these factors as empirical measurements was estimated by the application of

Cronbachs' alpha procedure (Cronbach, 1951). Coefficients, detailing computations of factor scores

are presented in Appendix 5.7 as a measure of internal consistency or equivalence. In the current

study, when reliabilities was carried out, each of the subscales had Cronbach’s alpha greater than

0.70. The criterion for acceptability was taken at the level of 0.30-0.40 (Polit and Hungler, 1991).

Since the distribution of scores of each subscale was approximately normal, it was possible to apply

parametric tests in subsequent data analysis procedures.

5.12.1 Validity

Despite the mathematically robust properties of factor analysis, its value is commonly estimated

in terms of the degree to which it is conceptually meaningful (Norusis, 1985, Alt, 1990; Nolan

and Grant, 1992). Since factor analysis does not include a technique to ensure validity, it is

essential to ensure that it is possible to make sense of the factors (Norusis, 1985, Alt 1990). The

factors were validated against accompanying data external to the analysis process. This practice

is widely deemed as an appropriate and essential component of data validation (Child, 1970, Alt,

1990, Nolan and Grant, 1992). In the current study, validation of the emergent factors was

derived from independent qualitative data. This loaned considerable weight to the level of

confidence that may be attributed to these findings.

5.12.2 The Interrelations of the Concepts

The theoretical model for loss of control, self-fulfilment, and social isolation and loneliness

would suggest that as social isolation increased there is a corresponding increase in loss of

control, and a decrease in self-fulfilment. Thus, there is evidence of a positive correlation

between loss of control and social isolation and loneliness, and an inverse relationship between

loss of control and self-fulfilment.

73

14/05/23 04:43

Table 5.26: Inter-item Correlations and their Significance

Inspection of Table 5.26 shows that the relationships are indeed as may be expected. The

correlation between loss of control and social isolation and loneliness is 0.41 (p.= 0.0001).

Although this is just outside the level of significance at the 0.05 level, it is significant at the 0.01

level. Thus, it may be deduced with 90% certainty that this result did not occur by chance. This

shows that as social isolation increases, there is increased potential for loss of control. The

correlation between loss of control and self-fulfilment is negative; as would be expected with a

coefficient of r=-0.134. There is no relationship between self-fulfilment and social isolation.

Clearly, there is no theoretical reason as to why there should be such a relationship.

5.13 Hypothesis Testing and Tests of Statistical Significance

Theoretical distributions were used to establish probable and improbable values for test (t)

statistics, based on acceptance or rejection of the null hypothesis (Polit and Hungler, 1991). By

way of determining the range of improbable values, the means at both ends of the sample were

tested through the application of two-tailed tests.

5.13.1 Hypothesis Testing Related to Social Isolation

It can be hypothesised that carers who live in rural areas are more likely to experience social

isolation than those who live in urban areas. This hypothesis was tested using t test, a parametric

procedure for testing differences in group means. The computations of the t-statistic for

independent samples detailing these results are shown in Table 5.27. The mean score for those

74

1.000 -.134 .418**-.134 1.000 -.090.418** -.090 1.000

. .063 .000.063 . .217.000 .217 .197 194 190194 197 190190 190 194

TOTNLOCTOTNSFTOTSOCISTOTNLOCTOTNSFTOTSOCISTOTNLOCTOTNSFTOTSOCIS

PearsonCorrelation

Sig.(2-tailed)

N

TOTNLOC TOTNSF TOTSOCIS

Correlations

Correlation is significant at the 0.01 level (2-tailed).**.

14/05/23 04:43

in rural areas is higher than in urban areas. However, the mean difference is not statistically

significant.

Table 5.27: Mean Scores and Standard Deviations on Social Isolation

(t=1.22. df =192, p.=ns)

5.13.2 Hypotheses Testing Related to Loss of Control

It can be hypothesised that carers of the mentally infirm sample are more likely to experience

loss of control than those who care for general categories. This hypothesis was tested using t

test. The results are shown in Table 5.28. Although loss of control was shown to be higher

amongst carers of mentally infirm persons, it was not statistically significant.

Table 5.28: Mean Scores and Standard Deviations on Loss of Control

Table 5.29 Descriptives for Loss of Control and Confusion

75

106 19.6321 5.7127 .554988 18.5227 6.8414 .7293

GeographicalLocationRuralUrban

TOTSOCISN Mean

Std.Deviation

Std. ErrorMean

Group Statistics

145 13.4483 3.5958 .298649 13.8571 3.7639 .5377

GroupingGeneralEMI

TOTNLOCN Mean

Std.Deviation

Std. ErrorMean

Group Statistics

46 14.0217 3.6239 .5343 12.9456 15.0979 5.00 20.0097 13.1753 3.8757 .3935 12.3941 13.9564 4.00 20.0054 13.9444 3.0863 .4200 13.1021 14.7868 4.00 20.00

197 13.5838 3.6210 .2580 13.0750 14.0925 4.00 20.00

FrequentlyOccasionallyNeverTotal

Does the person you care forsuffer fromconfusion?

TOTNLOCN Mean

Std.Deviation Std. Error

LowerBound

UpperBound

95% ConfidenceInterval for Mean

Minimum Maximum

Descriptives

14/05/23 04:43

As indicated in Table 5.29, those who care for older people who frequently experience periods of

confusion are more likely to experience loss of control. However, as seen in Table 5.30,

statistical analysis reveals no significant difference.

Table 5.30 Anova for Loss of Control and Confusion

Table 5.31: Anova Results for Loss of Control and Length of Time Caring

Inspection of descriptives Table 5.32; shows that carers with the highest score on loss of control

were those caring for twenty years or more and carers who had embarked on the care-giving role

within the preceding one to two years. This indicates a trend regarding initial problems of

adaptation to the role. There is also a trend towards greater loss of control in parallel with the

increasing duration of the care-giving role. As shown in Table 5.31; this trend is statistically

significant at the 0.01 level (p. = 0.669). Therefore, it can be deduced with 90% certainty that

this result was not due to chance.

76

32.036 2 16.018 1.224 .296

2537.832 194 13.082

2569.868 196

BetweenGroupsWithinGroupsTotal

TOTNLOC

Sum ofSquares df

MeanSquare F Sig.

ANOVA

42.381 5 8.476 .641 .669

2527.487 191 13.233

2569.868 196

BetweenGroupsWithinGroupsTotal

TOTNLOC

Sum ofSquares df

MeanSquare F Sig.

ANOVA

14/05/23 04:43

Table 5.32 Descriptives for Loss of Control N Mean Std. Deviation Std. Error

TOTNLO How long have you been a carer?

Up to one yearMore than one year but less than twoBetween two and five yearsBetween five and ten yearsBetween ten and twenty yearsTwenty years or moreTotal

13

52

52

40

32197

14.00

13.730

13.019

13.300

14.25013.583

4.3780

3.5431

3.7127

3.8310

2.96213.6210

1.2142

.4913

.5149

.6057

.5236

.2580

Table 5.33 Loss of Control and Respite Care

The degree to which loss of control was ameliorated by respite care was also examined.

Although those carers who received respite care experienced less loss of control, the result was

not statistically significant. The mean and S.D. for loss of control for those who received respite

care can be seen in Table 5.33.The t value = 0.68 df = 194 p = 0.49.

Table 5.34 Descriptives for Self Fulfilment and Length of Time Since Receiving a Break

N Mean Std. Deviation Std. Error

TOTNSF How long is

it since you

had a break,

lasting a

week or more

away from

your caring

role?

Less than six months

Between six and twelve

months

Between one and five years

Between five and ten years

Over ten years

Never

Total

55

18

44

20

11

49

11.1455

10.7778

9.7045

10.1500

9.5455

9.0612

3.3245

3.2998

2.2473

3.2650

2.4643

2.6802

.4483

.7778

.3388

.7301

.7430

.3829

77

66 13.3333 3.8042 .4683130 13.7077 3.5469 .3111

Has thepersonyou carefor everbeenoffered'RespiteCare'?

YesNo

TOTNLOCN Mean

Std.Deviation

Std. ErrorMean

Group Statistics

14/05/23 04:43

197 10.0812 2.9784 .2122

It can be observed on examination of Table 5. 34 that those carers who did not receive breaks of

a week or more experienced less fulfilment than those in receipt of a break from the care-giving

role. Self-fulfilment was most evident amongst those carers who received a break within the

preceding six months. Those who reported never receiving a break experienced the lowest levels

of self-fulfilment. The mean levels of self-fulfilment fall as the period since receiving a break

from care-giving increases. The lowest mean score of 9.06 was amongst those respondents who

claimed that they never had a break from their care-giving role. An inverse relationship was

found in that the longer a person cares without a break, the greater the loss of self-fulfilment.

This is indicated by the decrease in mean scores for self-fulfilment, shown in Table 5.35. This

result was statistically significant at the .010 level. Hence, there is 95% certainty that this result

was not due to chance.

Table 5.35 Mean and S.D. for Self-Fulfilment and the Period of Time Without a Break

The t value = DF=5 p=. 010 (p.0.05)

Table 5.36. Social Isolation and the Number of Hours Spent Care- giving Daily

95% Confidence Interval for Mean

Lower Bound

Upper Bound

Minimum Maximum

TOTSOCIS How many 0 – 3 19.2104 23.4348 8.00 33.00

hours a day 4 – 8 17.7410 21.6108 7.00 30.00

do you spend 9 – 15 18.1284 23.0440 9.00 35.00

caring? 16 - 24 16.4162 18.9380 7.00 32.00

Total 18.1968 19.9690 7.00 35.00

78

131.500 5 26.300 3.126 .010

1607.200 191 8.415

1738.701 196

BetweenGroupsWithinGroupsTotal

TOTNSF

Sum ofSquares df

MeanSquare F Sig.

ANOVA

14/05/23 04:43

Table 5.36. shows that the greater the number of hours spent caring daily, the more likely the

carer is to experience social isolation. As shown in Table 5.37, this result was statistically

significant at the .011 level. Therefore, it can be deduced with 95% certainty that this result was

not due to chance.

Table 5.37 Mean and S.D. for Social Isolation and the Number of Hours Spent Caring

Daily

79

423.767 3 141.256 3.784 .011

7054.906 189 37.328

7478.674 192

BetweenGroupsWithinGroupsTotal

TOTSOCIS

Sum ofSquares df

MeanSquare F Sig.

ANOVA

14/05/23 04:43

Section Two: Results of In-Depth Interviews

5.14 Key Considerations

Although the findings of the in-depth interviews alone prohibit generalisations, due to the

relatively small sample size; many of the findings are consistent with those evidenced through

the process of triangulation. Hence, these findings will be related to focus group and survey data,

where correlations were found across the three data sets. As outlined in chapter three,

comparison analysis was conducted between the manual thematic analytical process and the

application electronic software, using similar techniques to those invoked in the analysis of focus

group data. Consequently, theoretical constructs emerged from a process of thematic analysis.

Theoretical issues can then be tested in order to enhance understanding of the data.

5.14.1 Presentation of Results: Thematic Developments

Data were collected from carers, in their own environment and language. In presenting the

results of the analysis of the ten in-depth interviews, issues arising from the topic guide will be

dealt with first (see Appendix, 3.13). Further unsolicited topics are also discussed where carers

identified topics as a priority for discussion. Analysis of the content of these interviews

uncovered conceptual similarities between focus group and survey data. Consequently, common

themes emerged between focus group, survey and in-depth interview data. The thematic

foci/categories derived from the in-depth interview data are portrayed through the use of pertinent

quotes within the text. Congruence between the results of both the analysis of the qualitative and

the quantitative results contributed significantly to the validity of both.

A thematic framework made up of key categories was developed, based on carers’:

Needs and experiences;

Education and training requirements;

Perceptions of statutory, professional, voluntary and familial roles and responsibilities;

Impressions of the adequacy and efficacy of carer’ support services;

Levels of user involvement;

Overall health, wellbeing and quality of life.

Specific care-giving dynamics are separated for ease of presentation. However, it can be seen

that there are strong similarities between the multidimensional aspects of the care-giving

experience, which are often inextricably linked.

80

14/05/23 04:43

5.14.2 Statutory, Professional, Voluntary and Familial Roles

The current analysis shows that many carers feel that the responsibility for caring primarily rests

on one female family member. However, “sometimes it is not possible…women are out

working” (No. 237, p.1-2). It was suggested that in Ireland there exists a:

“Strong culture that we should look after our parents, with extended families is no longer

the case, usually the family is totally dispersed” (No. 86,p.4).

This correlates with survey and focus group data as well as similar research (Twigg and Atkin,

1994, Kane and Penrod, 1995, Jennings et al 1997). While considerable family loyalty was

evidenced, “I have the strong sense of duty to my mother” (No. 86, p.16) many carers were of

the opinion that the responsibility for caregiving was such that it was often “left to one”, (No.

122, p. 3) family member. Other respondents expressed the importance of their responsibilities

suggesting

“I was the oldest in my family, the only girl, I was the one who was left”(No. 237, p.14).

Regarding governmental responsibilities, carers believed that “they should be doing more”

(No.181, p. 1) and “look after carers properly” since “carers are vulnerable, and can feel very

isolated”, (No. 86, p. 1) describing the governments’ attitude as “negative” (No. 181, p. 38).

Many carers believed that

“the Health Board should give you help…somebody to come in for an hour, if you wanted

to go away for an evening” (No. 237, p. 30).

However, “it is very hard to get a home help”, particularly in rural areas (No. 158, p. 27), where

the service was described as “inadequate” (No. 86, p. 3). While respondents believed that the

Health Boards had a clear responsibility to support the care of older people, he believed that the

Board were “over stretched” (No. 122, p. 5) financially and have not been awarded the

necessary funding. A common belief was that the government “should provide more money to

the Health Boards, give them more scope and leave them decide what they want” (No. 158, p.

10). This carer called for “some kind of investigation, then bring it to the notice of the Health

Board” (p.13) citing examples such as assessing “our ability to get around, and to know are you

doing the right thing” (p.13) regarding the care-giving role. Many carers felt that the individual

needs of older people are not considered by State managed care agencies

81

14/05/23 04:43

“I feel the main responsibility does rest with the family, wherever possible…giving over

responsibility to the State is not a good thing…that does not take into account the

individual needs of the person”.

5.14.3 Family Dynamics

Tensions were sometimes borne out of misperceptions amongst family members regarding the

role of the primary care giver, “There are times when it would cause tensions…my mother can

be a demanding woman” (No. 122, p. 8). According to one respondent “they didn’t realise

exactly what I was doing…there was a lot of falling out” (No. 68, p. 26). Yet another carer, felt

that the minimal support he receives from his family suggested to him that “they just take it for

granted” posing the question “who cares about the carer…people like carers are not thought

of…not acknowledged” (No. 318, pp. 15-16).

“You do feel sad when you are sitting in the house on your own at night-time, you have

so much family and none of them coming near you” (No. 318, p. 32).

5.14.4 The Care-giving Environment

A willingness to engage in family care provision was evidenced. All carers interviewed

expressed the view that home care settings were the optimal environment for the care of older

people

“I think it is great if they can be looked after in the family home, it improves their life

anyway, there is no doubt about that” (No. 122, p. 16).

Furthermore, home care was associated with a sense of future “that is why I feel the hope, while

she is in her home” (No. 246, p. 26).

In particular, this assertion was portrayed in relation to the care of mentally infirm persons

“…if they were in an institutionalised place they would clam up and just sit there” (No. 5, p. 2)

“she loves her home, she knows she is in her home, she is happiest” (No. 68, p. 16).

Furthermore, respondents expressed a preference for in-home respite care “I would only be

happy if she was looked after in the home” (No. 68, p. 24). Participants suggested that carers

could be further enabled to avail of respite services

82

14/05/23 04:43

“If someone came here to look after her for the week or two weeks and give them the

money rather than put her into [an institution]” (No. 181, p. 21).

Survey data further supports these findings. Similarly, Nolan and Grant (1992) found that many

carers perceived institutional care are unacceptable and derived satisfaction from their ability to

provide home care, “I have given everything…I can be fulfilled” (No. 68, p. 19). Another carer

recommended the development of “a carers’ panel, someone who would come in for three or

four hours” (No. 246, p. 10). One carer summed up the sentiments of many carers as follows

“a lot of people want to do it but they can’t afford it financially, instead of having the

capital expense of more buildings and employing more nurses, why not give some

financial incentive to people to keep a person at home out of hospital” (No. 86, p. 19).

5.15 The Nature and Extent of the Care-giving Role

As evidenced in focus group and survey data, the carers’ role is often multifaceted embracing

transformational changes in carers' lives. In many cases, the care interventions required by the

older person led to psychosocial, economic and behavioural modifications, impacting on the

carers' quality of life. One male carer, profiling the extent of his involvement stated “I moved

my bed up to her room, so I am there in the night-time when she calls me” (No. 181, p. 9) adding

“If she wasn’t here now, I would be in town living with my own family…I miss them and

they miss me…if more people called into her, I might have more time for my family” (No.

181, p. 33).

Some carers who were also older persons expressed concerns about their ability to provide care

in the future

“the thing that really worries me at times…suppose I was lying in bed and got a heart

attack or something, what would happen” (No. 318, p. 10)

Sometimes older people do not see themselves as having a carer

83

14/05/23 04:43

“They are not really aware of their dependency, although the dependency is there it is not

acknowledged by them”(No. 5, p. 9). Conversely, some carers illustrated the level of

interdependency that can exist between the carer and the care recipient “she helps me and I help

her” (No. 158, p. 33).

5.15.1 Psychological Impact of Care-giving

Many examples of stress among participants throughout the current study reflected the impact of

the care-giving role on carers’ psychological morbidity. Carers described changes in their

psychological well-being as considerably more profound than other aspects of their health. In the

current study, many assertions in previously presented data regarding the magnitude of the

carers’ role found resonance in the present analysis

“The stress is that you are twenty-four hours looking after them” (No. 68, p. 11). This

respondent reported that: “when they are battling with you…you could call them a name…you

could shake them” (No. 68, p. 34). This experience graphically illustrates potential conflicts that

may ensue due to the complexity and intensity of the care-giving relationship. Correlations

between survey and interview data indicate a trend regarding initial problems of adaptation to the

caregiving role (see Table 5.31).

“The first two years were just…I nearly had a breakdown, I was a total wreck trying to

come to terms with it…I would just cry…she wouldn’t even know you sometimes… you

would even turn against them, that’s how bad it can be” (No. 68, pp.5-7), “Now, I can

deal with any situation, so it is not as bad as in the beginning”(No. 68, p. 36).

Throughout this study the level of stress experienced by carers was alarming, “I react and fly off

the handle at times”(No. 122, p. 15). Sleep deprivation was depicted as a particularly

“desperate” factor in the genesis of psychological stress. Also, carers suggested that cognitive

disorders exacerbated the difficulties, sometimes resulting in a loss of control “It is hard to strike

the balance” (No. 237, p. 18). Deterioration in the dependent persons psychological state gave

rise to feelings of social isolation, loneliness, sadness and loss of persons they held dear

throughout their lives

“There is a certain sadness and loneliness, you can’t carry on a conversation, I find that

stressful… I find myself looking back to the days when they were strong and healthy…full

84

14/05/23 04:43

of life, full of joy…I know that is gone forever, but there is a certain sadness there, and

then I kind of feel a bit isolated, a bit lonely” (No. 5, pp. 17-18).

Another carer described the latter scenario as the “worst part of being on your own with the

person” (N. 246, p.27). Other respondent described “not seeing other people, loneliness” (No.

246, p. 23) as a central concern. A carer in his eighties reported feeling

“A bit isolated… depending on neighbours, because they are all working. we are like

passing strangers, you have no transport, that way you cannot see people, so you are

here all night” (No. 158, pp. 5-6).

Throughout the interviews, physical care demands; hygiene issues and increasing care

dependencies were described as stressful

“I look at her not able to get out of the chair to do anything, that is the most upsetting

part of it…nobody kind of cares”, which rendered this carer “very sad and angry at

times” (No. 318, p. 12).

“What worries me most, and I suppose every carer worries about this, how am I going to

cope with a bedridden situation” (No. 5, p. 23).

5.15.2 Socio-Economic Factors

Some carers believed that socio-cultural factors in contemporary society had negatively impacted

on the care of older people in the community:

“It is not like years ago, you would have people coming into your house, neighbours and

so on, but that is all gone, nobody has time anymore” (No. 318, p. 13).

Despite the social constraints associated with care-giving, the loyalty and dedication expressed

by many carers was quite profound. As a lady caring for two brothers explained “I do it not

because I am a carer, but because I am their sister and they need me” (No. 5, p. 29). Another

very young carer reported “I had to give up my job…I would do it anyway for my mother” (No.

68, pp. 3-4). However, this carer believed that “a little more money would help” (p. 13)

particularly for young carers in such circumstances. Similarly, another carer described how her

employment opportunities had been curtailed “I wouldn’t mind a part-time job” (No. 44, p. 6)

stating that “some allowance really is important” (No. 44, p. 38).

85

14/05/23 04:43

Many carers supported an argument for increased economic benefits for carers referring to

government savings where dependants are cared for in home care rather than institutionalised

settings “I must surely be saving expenses in the hospital” (No. 237, p. 1). An overarching

belief amongst carers was “that there should be a concerted policy effort to keep people at home,

but people need financial assistance to do that” stressing the need for “surveillance” (No. 86, p.

23) in the context of carer support services.

5.15.3 Physical Issues

The importance of obtaining an appropriate assessment of carers' skills, abilities, roles and

responsibilities, in consultation with the carer, emerged as an issue of immense importance.

Many carers received “no assessment” (No. 5, p. 22) and found the physical aspects of care-

giving particularly challenging

“It can take so much energy out of you, physically…your mind, body and soul” (No. 68,

pp. 25-26).

Another respondent felt that “there were times when you would be exhausted” claiming that

even at night “you are aware of every sound and every movement” (No. 246, pp. 20-21).

The nature and extent of the physical aspects of care-giving can be particularly difficult for

carers who experience chronic health problems or are older persons themselves. A male carer in

his late seventies profiled his situation stating:

“I have a heart complaint and am a diabetic. My wife is in nappies; she has to be lifted

up in bed in the mornings, washed, cleaned and dressed. I organise her hair and put a bit

of make up on her face. I take her out to the car, lift her in and go to the Priory, where

she goes to church, she has to be lifted into bed like a baby, I do everything on my own”

(No. 318, pp. 4-5).

This man had been providing care for his wife since 1994 and had received no education or

training.

5.15.4 Coping Strategies

86

14/05/23 04:43

Many carers suggested that “the support of family” (No. 44, p. 21) was central to coping with

challenges in care-giving, suggesting “You couldn’t do it without them” (No. 246, p. 8). The

latter respondent stressed that in order to cope “to ask for help is probably the best thing you

could do” (No. 246, p. 28).

Carers’ emotional responses and coping strategies were particularly challenged when the older

person appeared unappreciative of their efforts

“Ingratitude is a little bit stressful, I find that hurts…so, I think patience is a virtue that

you need” (No. 5, p. 17).

Such ingratitude is compounded by the fact that many older people refuse to attend support

services “he wouldn’t go to the day-care centre” (No. 237, p. 12) or accept help from anybody

except the carer

“I mentioned would they be interested in having a district nurse on a regular basis, they

don’t want that…they only want me” (No. 5, p. 25).

Similarly, another carer explained that his wife would not accept outside help since “she still

thinks of me as the only one” (No. 319, p. 9). The following explanation was suggested as

contributing to such behaviour

“When they were growing up, all the elderly had no care except for the family…there

was no such thing as respite care or social services…they are all alien things to those

(older) people, intruders into their world” (No. 5, pp. 26-27).

Many participants suggested that “Patience is a thing you would want to have in abundance”

(No. 44, p. 32). This respondent reported the benefits of enabling the older person to live

somewhat separately in an extension of the family home

“You still feel you have your privacy, it’s like two separate houses. I don’t know how I

would cope if she was here all the time I don’t think I would be able to manage” (No.44,

pp. 33-34).

5.16 Positive Aspects of the Carers’ Role

87

14/05/23 04:43

Despite the high levels of stress evidenced in the present sample, undertaking the caregiving role

was associated with a sense of personal worth and was not necessarily a burden.

“I don’t feel she is a burden” (No. 44, p. 11) adding “I am sure they [the children] will see it

was nice to know their grandparents…being so near to them” (No.44, p. 31). A significant

degree of satisfaction was experienced by the act of giving of oneself

“I am happy to be doing it” (No. 181, p. 6) “she looked after me when I was only a child, and I

am returning the complement…to me, it is important” (No. 181, p. 10). Other carers echoed

these sentiments, especially where institutionalisation could be avoided

“The good side is that you are doing it and you want to do it. Would you rather do that

for your mother or would you rather see her go into hospital…that is my contention…

they are happier in their own environment” (No. 318, pp. 23-24) adding “it has brought

us closer together” (p. 29).

In some ways, the care-giving role enabled carers to gain a deeper understanding of the human

condition,

“It gives me a purpose…I feel it keeps me going…the fact that I have to do something, I find it an

advantage even though sometimes I feel a bit overwhelmed…the demands on me might be fairly

strong…it is part of the fabric of my life” (No. 5, p. 15).

Despite its challenges, feelings of self-fulfilment rendered the care-giving role less onerous and

somewhat rewarding, “I feel I have made a difference to their lives” (No. 5, p. 31).

“I know myself if my mother passed on, I have given everything…I can be fulfilled” (No. 68, p.

19). Similarly, another participant felt that

“ I did my best for her...that would be the big thing...you owe them something and I

wouldn’t have any regrets” (No. 44, pp. 23-24).

In summary, it was thought that “there are more positive than negative, at least you are doing

something for someone” (N158, p. 22). These data correlates well with other results in the

current study as well as recent research findings (Yamashita, 1998, Kellett and Mannion, 1999).

5.17 Impressions of the Adequacy and Efficacy of Carer’ Support Services

88

14/05/23 04:43

Interaction with health care professionals was perceived as a matter of considerable importance.

Carers paid tribute to the support received from healthcare professionals

“I find them very, very willing” (No.5, p.6). Although many respondents valued the support of

public health nurses, “she was super, excellent” (No.246, p.2); the need to make “more

resources available to them” (No. 122, p. 14) was recommended, since respondents did not

“think they were calling enough, just to see how you are” (No.318, p.7) and “should call more

often” (No.181, p.3). Nonetheless, public health nurses were seen as “very approachable”,

providing “the main contact” between carers and health care services (No.158, p.14).

“The nurse is very good to her…if I needed anything there would be no problem…it is

fantastic to have her calling” (No. 44, pp. 8-9).

Conversely, the support provided by some health care professionals was described as “minimal”

(No. 86, p. 6). Some carers described the management of services for carers as a process that

lacked proactivity and health promotional opportunities

“The specialist said I thought it was agreed that you would only come back to us if you

couldn’t cope or if there was a major problem” (No. 86, p. 12).

Services primarily targeted at increasing dependencies may indicate a lack of preventative

measures directed at promoting the health of both the carer and the older person. The

contribution of the voluntary services was acknowledged. Consistent with focus group and

survey data, the importance of supporting and promoting voluntary agencies was clear

“They deserve support…they are the people who deal with old people…they know what

appeals to old people” and should be “consulted” (No. 122, p. 19-20)

The significance of respite care, residential and long-term supportive care interventions was

highlighted across all interviews. Respite services were described as “vital” (No. 122, p. 12) in

enabling carers to maintain and sustain their care-giving role. This carer expressed the view that

respite care enabled him to exercise more control over his life “at least you would be free to get

up whenever you wanted…just small things like that” (No. 122, p. 12). Another carer stated that

without respite care

89

14/05/23 04:43

“I would say I would go nuts… I may not go, but I like to know I can go” (No. 246, p. 21).

Yet, many carers reported that they had “never” been offered respite care. Where carers did

avail of a break, some claimed that they “depend on our neighbours” (No. 44, p. 18) to do so.

However, there was evidence of reluctance to take a break when

“all she wants is to see me walking in the door and I do feel kind of guilty” (No. 318, p.10).

Some carers believed that current services were “limited” (No. 122, p. 27) and should be more

flexible, thereby providing “another bit of freedom” (p. 28) for carers experiencing social

isolation or loss of control over their personal lives. Other carers in similar situations conveyed

feelings of being trapped both physically and emotionally, in their care-giving role

“It is devastating really…you are bound and you are caught” (No. 68, p. 8) “… you feel

hemmed in and trapped at times” (p. 23) “…I am still young…it affects your social life” (pp.

30-31).

“Your privacy is gone ...I find that very hard.” (No. 44, p. 3) “…you are very tied”, (No. 44, p.

9) suggesting that loss of privacy and independence can impact negatively on family dynamics.

These feelings were exacerbated when carers felt isolated and abandoned by a system, which

failed to provide any meaningful acknowledgement or recognition of their efforts.

“I think it is just taken for granted…this job is done by families and in the end it is

forgotten by people in authority” (No. 44, p. 40).

Consistent with the previously detailed analyses, stressful aspects of the financial aspects of care-

giving were evident. A number of carers reported a lack of awareness regarding the carers’

allowance and related eligibility criteria

“I find nobody tells you anything, what you are entitled to” (No. 318, p. 25), while another carer

asked, “would you have to pay for them” [day-care services] (No. 181, p. 19).

A carer in his eighties, thought the means test was “disgraceful,” (No. 158, p. 2) adding

90

14/05/23 04:43

“You should be entitled to facilities and I don’t think that is too much to be asking of any

government in your old age, having made their contribution to society” (pp. 30-31).

Carers expressed frustration and hopelessness arising from a lack of information and the

inadequacy of statutory respite care and other support services

“I have asked before, what kind of help is available and I still haven’t got any real

answers, there are lots of things I believe that you can get that you don’t know about”

(No.318, pp.7-8); recommending “there should be leaflets given out every so often…just

to show them that there is someone around” (No. 181, pp. 26-27).

“I think a local authority or government should be there in a back-up situation…a

consultative type role would be good, where you can get guidelines” (No. 5, p. 2).

The lack of statutory support services was such that carers reported that “anything you want you

have to look for” (No. 158, p.4). Furthermore, “transport is the main thing” (No. 158, p. 33) that

mitigates against accessing support services, in rural areas.

Some carers felt that obtaining essential appliances and supports was laden with bureaucracy,

“red tape and hassle, I was told there was a twenty four month waiting list for an Occupational

Therapist to come to an eighty year old” (No. 246, p. 2) adding “I made seventeen phone calls

before I eventually got an answer” (p. 5).

Many carers found that involvement in this research study raised their awareness of the

significance of their role

“I am thankful for this opportunity of being able to identify myself” (No. 5, p. 35), while another

respondent felt that the research indicated to him “that there was someone starting to do

something for us” (No. 181, p. 25). It was thought that the current research project assisted in

making carers

“more aware…I suppose I wouldn’t have thought anything about this until you sent out

the questionnaire. we wouldn’t really have known where to turn…” (No. 44, pp. 35-36).

91

14/05/23 04:43

5.18 Care Planning

All three data collection procedures reported no evidence of discharge planning or any form of

needs assessment in order to secure the successful transfer of care from institutionalised to home

care settings. The latter findings found support in the present analysis,

“I think people should be assessed” (No. 68, p. 37).

Another respondent portrayed somewhat fragmented, uncoordinated service links

“There is no correlation between the hospital care and being put back out into the home” (No.

86, p. 13).

Additionally, the importance of planning the provision of care amongst family members was

emphasised, suggesting that forward planning could enable family members

“To lay out a routine from the beginning…if you could have time beforehand to discuss it with

other family members…” rather than having “it thrust upon us” (No. 120, p. 170).

“If you can anticipate and you can plan, I think it is half the battle” (No. 5, p. 24). Other carers,

referred to the need for “a more proactive role” (No. 86, p. 22) to be taken by statutory bodies.

In consulting with and assessing carers’ needs, “there should be an effort to find out the carers’

point of view” (No. 86, p. 14). Other carers suggested that

“If somebody did call, ask them how they are coping. of their own accord …just the fact

that somebody called, you feel somebody cared about the person looking after them”

(No. 44, pp. 36-37).

“For the government to move forward, they need plenty of information…every

household, every carer and every older persons’ circumstances are different…so, they

have to be surveyed” (No. 68, p. 38).

5.19 Education and Training

A considerable lack of training for carers in relation to lifting and handling skills was identified.

The need “ for somebody to come along and show them [carers] what to do and what not to do”

92

14/05/23 04:43

(No. 246, p. 30) was deemed important, particularly in “families where they wouldn’t know how

to cope in a particular situation”(No. 86, p. 22).

Concerns were also voiced regarding a lack of monitoring and support for carers, where new or

altered medication had been introduced, “there is always a danger on tablets, if you got a bit of

guidance it would help” (No. 122, p. 18).

93

14/05/23 04:43

CHAPTER SIX

6.0 Introduction

This study represents the first attempt to study a sample of informal carers within the South

Eastern Health Board area. Since the self-administered questionnaire was distributed to a sample

drawn randomly from a limited geographical area, results may only be generalised to similar

populations. Furthermore, interview results are not generalisable. Nonetheless, this study

presents substantial information in an area of health and social care, the extent of which has not

been previously investigated comprehensively in Ireland. This chapter includes a discussion of

these results.

6.1 Carer Language, Definitions and Interpretations

Issues surrounding the identification, definition and language used in reference to carers requires

further clarification amongst health care professionals and carers themselves. Perceptions of the

role do vary, giving rise to considerable ambiguity. This highlights the importance of identifying

inclusion criteria that constitute a common approach to the identification of carers. However,

such a definition will not clarify varying perceptions amongst informal carers who see their role

as a 'duty' or responsibility that does not ‘fit’ with their perceptions of the ‘informal carer’ label.

From a sociological perspective, the culture of care-giving was found to be a factor across rural

and urban care settings, influencing how both carers and care recipients perceived care-giving

roles and responsibilities as well as the relevance and significance of supportive services.

Therefore, the meaning that carers and older people attributed to care-giving in all its dimensions

was influenced significantly by the culture of the study population. The service implications of

such cultural sequelae require careful planning in terms of development and supportive

interventions.

6.2 Exploring the Nature and Extent of Care-giving

Analysis of the data sets reveals a correlation between factors such as loss of control, social

isolation, loneliness and self-fulfilment. The tiring nature of the physical aspects of care

provision was a key concern. Ongoing elevated levels of psychological arousal, particularly at

night may exacerbate carers’ stress levels. Indeed, mental frailty was deemed a matter of greater

concern than physical dependency. Evidence of increasingly older carers, decreases in the

numbers of available carers, coupled with changes in family structure and responsibilities for

94

14/05/23 04:43

care-giving may impact negatively upon the feasibility of home care in some areas. One carer

suggested the need to advocate so that families “share the care”, in an effort to reduce the so-

called burden of care upon individual family members.

These findings illustrate the nature and extent of informal care-giving, highlighting the

magnitude of the care-giving role, the impact of which can exert transformational changes in

carers' lives. Positive aspects of the care-giving role suggest that it is not perceived in

predominantly negative terms. However, carers’ perceptions of their caregiving role impact upon

the negative and or positive perspectives they attribute to it. The central factors underpinning the

direction of carers’ perspectives include:

The demanding nature of the carers’ role;

The quality of the carer/care dependent relationship;

Changes in the carers’ personal life;

Feelings of guilt;

Loss of control;

Family dynamics- the level of supportive interventions;

The adequacy and appropriateness of professional and statutory supports.

6.2.1 Needs Assessment: Procedures and Policy

In the interest of the common good, issues regarding carers in the community must be held in

balance with broader issues such as individual human rights, citizenship and ethico-legal matters.

Carers are part of a much more extensive system in society made up of many marginalised

groups. Yet, many felt that their own unique needs had become somewhat subsumed and

overshadowed by those of the care recipient.

Consistent with similar research, clear indications emerged as to the importance of identifying

and applying structured, holistic approaches in determining the type of support carers received.

This was essential in order to inform service plans and deliver timely and appropriate supportive

interventions. The importance of assessment measures is clear, given the broad spectrum of

dependency levels and caregiver needs. The assessment process defines needs and determines

carers' eligibility for support as indicated by predetermined stated policy criteria. However, there

is evidence of widespread failure in the conceptualisation of the care needs of older people;

95

14/05/23 04:43

especially the very frail (Nolan et al 1996). Furthermore, there was no evidence in the present

study of any guidelines or structures in relation to addressing carers’ needs. Specifically,

evidence of involving carers in care planning initiatives; setting targets towards the development

of appropriate service plans and evaluation processes was negligible.

The findings portray the importance of assessing carers’ needs in a structured co-ordinated

manner, amongst the multidisciplinary team. Exploring the interplay between carers perceived

stressors; expressed needs and coping mechanisms are key factors associated with maintaining

and sustaining the care-giving relationship. This is an issue of considerable importance both in

terms of the quality of services provided and health economics in respect of the balance of care

between primary and secondary care sectors However, there are clear indications of tensions

between fulfilling carers’ perceived needs for supportive services where conflicts emerge

between the carers’ perspective and that of the care recipient. Such differences and resistance

from older people themselves may militate against carers’ options in seeking health and social

supports that they perceive as necessary in order to sustain and maintain the care-giving role.

6.2.2 Support Services

Many innovations in home care have lacked evaluation (Challis, 1992). The principle of

providing appropriate levels of practical, psychological and socio-economic support was

evidenced by the findings of this study. It is a matter of substantial importance in the

development of a service distinctly orientated towards carers' needs. Indeed, the success of such

initiatives may influence carers’ capacity to continue care-giving; a matter on which the bulk of

community care policy depends.

The introduction of strategically planned interventions aimed at providing carers with effective

support systems may emerge from exploration and understanding of the impact which care-

giving exerts on carers’ lives. There was a general consensus among carers that the management

culture within the statutory services was such that there was a lot of 'red tape' and bureaucracy

associated with obtaining services. Carers’ perceptions of the degree to which statutory

healthcare agents understand their needs resulted in a wide range of sometimes disparate opinion.

While one survey respondent commented, “I don’t think they understand the commitment we

undertake”, yet another expressed the view that “professionals should present a package of

information carers need”. However, another carer stated that “any professionals we meet are

96

14/05/23 04:43

sympathetic to our case”, while another believed that although professionals understand carers’

needs “they don’t have the resources to provide the level of care that they know is required”. A

considerable reorientation of service structures would appear to be warranted if carers are to

receive the support they require.

Almost half the sample indicated that they would like more support from healthcare

professionals. Carers’ perceptions as to the most valuable contributions of health care

professionals highlight the perceived importance of interactions with public health nurses.

Some carers indicated that they were unclear about the differing roles of home helps and home

care assistants. The lack of availability, flexibility and continuity in terms of day-care and respite

care was a key concern since care-giving was widely expressed as a twenty four hour job, by

almost half the respondents surveyed, 89% of whom provided care seven days a week. Of those

surveyed, 41% were unaware of day-care services. In relation to respite care, two-thirds of carers

reported that they had never been offered respite care, while a further third who had been offered

respite care but did not avail of it, expressed the following reasons for non-acceptance:

The care recipient would refuse to go as they wished to remain in their own home;

Some carers stated that they were able to cope with the help of family and wished to maintain

the management of care within the family unit;

A common theme that emerged related to the carers’ belief that the older person envisaged

staying in their home as synonymous with retaining their independence and dignity;

Some carers stated that they were unwilling to allow the older person to avail of respite care

due to feelings of guilt, where they felt the older person might feel unwanted.

These findings have significance for the provision of respite care to carers. Carer stress may be

exacerbated rather than reduced where carers’ perspectives regarding supportive interventions are

ignored. Consistent with previous research, high quality support and respite services must be

planned in consultation with carers, and acceptable to both the carer and the dependent person

(Nolan and Grant, 1992; The Audit Commission , DOH; 2000). Reported low levels of service use

may be further explained by a lack of awareness of services coupled with a lack of knowledge as to

how to access such services. In a DHSS (1996) survey conducted in Northern Ireland, 42% of

respondents reported never having had a break from the caring role. Many carers expressed feelings

of guilt when they suggested respite care to their dependent. In such cases the burden of guilt was

such that respite was just not an option.

97

14/05/23 04:43

More than half the carers in the current study reported having no knowledge of financial services or

allowances available to them. Furthermore, carers reported that family and friends were a greater

source of information than the media or their family doctor. Many studies suggest a lack of

information as the main reason for non-utilisation of services (Dello Buono et al 1999). Some 70%

of carers in the former study reported feeling isolated in terms of their lack of knowledge regarding

available resources, stressing that they did not obtain enough information on services available to

carers. A similar rationale may underpin the poor uptake of services in the present study since two-

thirds of the sample claimed that they did not receive enough information to support them in their

care-giving role. The general experience was that services had to be sought after rather than offered

in a user-friendly manner.

Importantly, the more hours spent caring daily and the longer carers engage in the care-giving role

without a break, the more social isolation they are likely to experience. Feelings of social isolation

and loneliness may decrease the carers’ potential to continue in their role. Furthermore, carers who

did not receive breaks of a week or more experienced less fulfilment than those in receipt of a break

from the care-giving role. This is an issue of extreme importance since one third of respondents

indicated that they had never received a break from their care-giving role. Clearly, due consideration

must be afforded to these factors if effective, appropriate respite services are to be offered.

6.2.3 Profiling Carers' Health

The magnitude of the care-giving role exerts a significant impact upon the carers’ life, often

requiring substantial adaptations in response to a range of transformational changes. Physical,

psychosocial and economic demands influenced carers' responses to the caregiving role. Feelings

of stress were most commonly encountered where carers felt isolated, trapped or unsupported.

Carers reported deterioration in their physical and emotional health. Profound effects were also

expressed in areas of social and family life. More than half the sample expressed concerns about

their current health, while more than two thirds were concerned about their future health and

their ability to continue care-giving. While there were perceived effects upon these aspects of

carers' lives, it is difficult to determine the precise strength of association since other

confounding factors such as personal changes in the carers' life pattern may have influenced

these findings.

Carers adopt a broad range of coping behaviours including, problem-solving techniques and

cognitive coping mechanisms in attempting to manage stress and psychological burden.

98

14/05/23 04:43

Understanding the coping strategies employed in dealing with challenges in care-giving is central

to the development of carer-oriented support services. Analysis of positively and negatively

perceived aspects of care-giving evidenced significant correlations. The dimensions explored

embraced carers’ expressions of self-fulfilment, loss of control and social isolation and

loneliness. Consistent with a similar Swedish study, receiving more information and training for

the care-giving role was perceived as enhancing carers' ability to cope (Lundh, 1999).

Furthermore, a cognitive factor which influenced carers ability to cope, both in the latter and

current study was their ability to reflect on good past experiences with the care recipient. This is

consistent with UK research by Nolan et al (1996) who examined multidimensional aspects of

care-giving and coping. They found that carers reported that obtaining as much professional help

as possible was a particularly useful problem solving approach. However, in the present study,

there was a tendency to report relatively low expectations from professional services. This

phenomenon was also reported by Lundh (1999) who postulated that such low expectations may

occur as a result of a sense of independence amongst carers or a relative lack of available

professional support structures. In the present study, data detailing the frequency of interactions

with health professionals provides considerable evidence in support of the latter contention.

Furthermore, such low levels of interaction reduce opportunities for engaging in health

promotional and carer empowerment initiatives.

6.2.4 Health Promotion Factors

A client-centred approach is crucial to the promotion of health and social gain for carer and

dependent alike. This is in order to support the autonomy of the older person and their carer and

to remain supported in their own home with dignity and independence. Health promotional

initiatives may enable carers to attain a sense of identity and self esteem. Raising the profile of

the role, responsibilities and the meaning of family caregiving may enhance carers’ self belief

and confidence. This will help support the continuity of the home caring process and embrace the

protection of family life. Whilst there are stresses and strains inherent in family caregiving, there

are also therapeutic aspects of the role that may nurture carers’ ability to cope with the more

demanding components of family care. Indeed, some carers valued and enjoyed their role.

Nonetheless, the need for health professionals to provide adequate emotional support and

personal contact is imperative, in addressing a wide range of emotional responses.

99

14/05/23 04:43

Advancing the health and social care needs of carers and the recipients of care requires this level

of willingness and engagement. Concerted action, targeted resources and clear policy must be

enacted, within a clear framework. Successful needs assessment measures will require sensitive

eclectic approaches that reflect the perspectives and perceived needs of both the carer and the

older person. Mechanisms for collaborating with and empowering family carers is the ultimate

objective in terms of user/carer involvement in service planning and evaluation and may enable

family carers to ascribe new meaning to their experiences.

6.3 Conclusion

The main themes and categories arising from the data analysis were similar across all three data

sets. They also found resonance with findings in the main care-giving literature. These data

indicate trends in relation to carers’ needs and experiences as well as coping and mediating

factors pertaining to health, wellbeing and stress related outcomes.

This high degree of consensus across the data sets, coupled with the pluralistic approach to

research enquiry engendered greater confidence in the relevance and empirical value of the

findings. Given the distinct differences inherent in both the qualitative and quantitative

methodologies, the congruence between the analyses of the three data sets, further augments the

validity and reliability of the overall findings.

The need to raise awareness of carers’ issues among private and public service providers, media,

government and social partners is of considerable importance. Attitudes to carers need to be

examined, so that caring may be seen as a normal feature of many people’s lives. Voluntary and

non-governmental organisations can play a significant role at local level in promoting awareness

and information, using campaigns tailored to local circumstances. This is important in the

context of the decentralisation of services to delivery at local level, based on agreed national

standards. The balance between formal and family care must shift. There is a need for change

that reflects continuity and diversity in a co-ordinated and integrated manner. The challenge is to

establish and introduce appropriate and meaningful health and social policy initiatives to support

that shift.

Strategic assessment and monitoring of such important issues may enable the publishing of

functional and comparative benchmarks, which set out a clear view of the available services.

100

14/05/23 04:43

Policy development ought to possess sensitivity such that it can inform interventions for

individual caregivers and their dependants. This is an important issue in regard to addressing the

diversity of need amongst carers and those they care for, in an effort to adopt a more inclusive,

eclectic approach towards prospective innovations in health and social care policy formulation.

This study is not without its weaknesses and limitations. It is acknowledged that there may be a

number of ‘hidden’ carers with significant health and social care needs that have not been

explored. As discussed in chapter three, accessing hidden carers proved extremely difficult.

101

14/05/23 04:43

CHAPTER SEVEN

7.0 Introduction

The final chapter outlines conclusions and recommendations from the results of the study in

association with previous research findings. Central to the understanding of carers' needs and

experiences is an appreciation this diverse group with individual abilities, tolerance levels, values

and approaches to caring for older people. Their own needs and wishes display a similar degree

of disparity. Informal carers have been and continue to be hugely significant partners in the

totality of the health and social services provided to older persons. Nonetheless, consistent with

previous research, formal support services are often only employed when a crisis is reached,

informal support is unavailable (Fine and Thompson, 1993, Nankervis et al 1997) and the strain

of care provision becomes unbearable. Evidently, the ability of healthcare providers to convey

their understanding of the needs, experiences and significance of family care-giving is a key

issue in determining carers’ perceptions of the involvement of statutory and professional bodies,

as empowering and supportive or intrusive and negating (Nolan et al 1995).

The consultative nature of the current study led to the production of reliable and valid data on

which appropriate needs-orientated health service plans may be based. Attempts to consult with,

and take guidance from the carers themselves may help to build the trust and co-operation of the

respondents, thereby enhancing the potential value of this research project. It is anticipated that

the data produced will enable carers to make a valuable contribution to service planning at local

level, through having a voice at the corporate table.

7.1 Implications for Service Planning

The need for improvement and change is evident and may encourage a more positive vision of

ageing and caring for older persons. Both qualitative and quantitative data produced

corroborating evidence as to the complex and diverse nature of carers’ needs and experiences.

Contributory factors in the genesis of care giver burden as well as carer satisfaction indicators as

central to understanding the totality of the care-giving experience. In order to maintain and

sustain the future of informal care-giving, carers’ needs must be explored and addressed locally,

at service and policy level in an effort to promote their health and social gain.

Analysis of the main study findings produced comprehensive data, which may inform the

planning, and delivery of services for older people and their carers, towards benchmarking

102

14/05/23 04:43

models of best practice. A major theme that emerged from this study uncovers the magnitude of

the care-giving role, the totality of which exerts significant effects on carers' health and

wellbeing. To this end, 94% of respondents felt that the government should do more for the

carers of older people. The identification of carers’ needs and experiences of existing health and

social care services suggests the importance of ongoing monitoring and evaluation of the

efficacy of service structures, delivery processes and outcome measures. Assessing carers' needs

encompasses a range of needs including biological, psychosocial, economic, technological, and

informational and health promotional issues as well as palliative and terminal care concerns.

There are clear indications that health and social care service planners and providers must re-

orientate service delivery strategies in order to meet user needs and subsequently, avoid or delay

the unnecessary institutionalisation of older people.

Despite the sometimes incessant demands of the care-giving role, most carers reported a lack of

support services and respite care. The need for appropriate supportive interventions was widely

expressed. Most carers wish to delay or avoid the institutionalisation of older people, perceiving

home care settings as the optimal care-giving environment. Many welcome supportive initiatives

in the community, expressing preferences for greater scope and flexibility in the development of

supportive interventions. Specifically, carers’ preferences for in-home respite services were

conveyed. Furthermore, health service planners and providers need to take cognisance of carers

coping patterns in attempting to develop appropriate support services. The level of interaction

between statutory services and carers requires exploration, monitoring and evaluation. In

acknowledging carers' needs and experiences, it is important that statutory care agencies develop

new and innovative service plans in response to their continuing health and social care needs.

Education and training programmes should be established for carers in preparation for the care-

giving role. Clearly targeted policy embracing systematic tracking, assessment, planning,

intervention and evaluation processes is integral to the development of proactive service plans

that address carer centred needs.

7.2 Implications for Policy

These finding contribute significantly to the evidence base exploring carers’ needs and

experiences. The data has policy implications for the targeting and delivery of services. The

implications of an aging population, for both living and working conditions, require careful

consideration. Considering and consulting with the service user in planning, monitoring and

evaluation processes is crucial to the promotion of informed and realistic choices. The

103

14/05/23 04:43

development of ‘shared purposes’ is an issue of central importance in enhancing and improving

informal carers’ personal well-being and quality of life, in the promotion of healthier

communities and in the development of public health policy. The interface between health care

and social care is an integral component of planning, assessment, care management,

commissioning, and service delivery strategies (Department of Health, 1989). Relevant

government departments should make explicit their policies in relation to informal carers. Such

policies must recognise and acknowledge carers as individuals with distinct needs and abilities.

Inadequacies at various points of the care spectrum can inhibit choice about care options,

resulting in inappropriate care placements, over medicalisation and institutionalisation (Dello

Bruno et al 1999). The distribution of resources requires collaborative, cross-sectoral, co-

ordinated planning across categories such as age, illness and social grouping. The distribution of

resources such as economic supports and allowances warrants further policy review. The

anticipated continuing demands for family care, necessitate the integration of carers’ needs and

perspectives in future service planning and decision making networks, in partnership with

statutory and voluntary bodies. Cross-sectoral co-ordination and partnerships are imperative in

this regard. Furthermore efforts to redress the health and social care divide are required. The

primary objective of ‘adding life to years’ as well as adding ‘years to life’, as set out by The

World Health Organisation (1996) must prevail as a matter of the utmost importance in creating

a vision of caring for older people in the years ahead. One of the most profound challenges of the

next century will be to extend the ‘ health span’ as the ‘life span’ increases. Improving the health

span of older people may promote the independence of older people for as long as possibly,

thereby reducing the demand upon family carers in terms of intensity and dependency levels.

7.3 Recommendations

Meaningful practice and policy changes, directed and informed by current advances in the

evidence-base world-wide are required in order to redress service practice divides. If the meeting

of needs is to be democratic, open debate on the subject of carers’ needs is imperative. This

means that the process of needs assessment must be conducted in a manner where carers are

enabled to participate fully in decision-making about services. One of the most important factors

involved in meeting the needs of carers include the provision of information, which enables them

to seek appropriate help and improve the quality of their lives in order to care more effectively.

There was profound lack of awareness amongst carers regarding entitlements, benefits and

104

14/05/23 04:43

support services. This highlights the importance of opening information channels of

communication to reach people in most need of support services since many people don’t realise

what forms of support are available, or what services may be of benefit. Furthermore, some

carers experienced an inability to articulate their needs. The right to and the provision of

information in a user-friendly readable form, is clear since some respondents reported being

unable to access and understand written information. Similar studies suggest personal contact as

the optimal mechanism of giving and explaining information (Tester, 1996). The Department of

Health and Children and the Department of Social Community and Family Affairs should initiate

information initiatives aimed at enabling carers to access relevant information regarding a range

of support services. User-friendly resource centres for carers should be developed at local level.

In relation to health promotional factors influencing the promotion of health and social gain, these

results suggest that psychological and emotional aspects of care-giving such as sadness, loneliness,

loss, guilt and burden may mitigate against individual perspectives of personal health and wellbeing.

Carers often have limited opportunities to leave the home care setting and partake in health

promoting activities and therefore must be seen as potentially at risk of developing health problems

that may be averted by the introduction of relevant health promoting initiatives. These results are

consistent with similar research illustrating the complexity of the relationship between challenging

aspects of the care-giving relationship and health promotion (Sisk, 2000). Therefore, emotional and

social care interventions afforded to carers constitute an important component of service provision.

Clearly, a significant requirement of carer support services includes the provision of information

and education, dealing with their anxieties and concerns, bereavement counselling and crisis

emotional support. The importance of advocating for carers requires further consideration, based on

the belief that people should have a say in what happens to them thereby enabling carers to make

informed choices about the provision made for them and for whom they are responsible. Tailoring

respite services in response to carers needs is an essential service requirement. A co-ordinator of

carer support services should be appointed a link person between carers and service providers. Such

an advocacy service would increase awareness amongst carers in relation to the availability of

service entitlements and benefits. The implicit value of family caregiving must be seen in context,

as an aspect of living which any one of us may become a part of in the course of our mortal lives.

Community care systems must ensure that the healthcare environment in the community does not

emerge as a disseminated condensed version of institutional settings, further isolating the carer and

their dependants. To do so would be to overlook the enriching potential of a diverse society

105

14/05/23 04:43

fostering intergenerational solidarity and partnership with fellow citizens towards a strategy of

social inclusion.

7.4 Implications for Further Research

It is important to establish databases regarding the prevalence of informal caring, that may be

used by carers and service providers alike, based on systematic research findings in regard to

carers’ needs, may provide a useful resource for investigating and analysing periods of care-

giving. There is a distinct lack of information on the prevalence of working carers, the duration,

intensity, and nature of their family care-giving. Since caring is a multifaceted dynamic process,

important changes in experiences or patterns of behaviour, require further investigation.

The manner in which carers perceive themselves is a somewhat neglected area of research.

Although many see their role as having evolved from personal duty, responsibility and personal

attachment to the older person, others see themselves as irritable, resentful and passive in their

role (Askham et al 1992). Specifically, studies exploring caregiver perceptions of burden and

lack of control are required to examine relationships between these cognitive factors and health-

promoting behaviours. From a psychological perspective, specific links between this or other

stress related human emotions and carers' ability to engage in behaviours supporting health-

promotion and health maintenance are areas that require further inquiry. The relationship

between the carer and the person being cared for requires further focusing particularly on how

different forms of care might be developed to best suit the needs of both the carer and the care

recipient.

106

14/05/23 04:43

ReferencesAlt, M. (1990). Exploring Hyperspace: A non-mathematical consideration of multivariate analysis,

McGraw Hill, Berkshire, UK.

Askham, J.E. (1992) Caring: The importance of Third Age carers. Age concern. Institute of

Gerontology, Kings College, University of London.Audit Commission (2000) Forget Me Not: Mental Health Services for Older People. Audit

Commission, London.

Banks, P. (1999) Carer Support: Time for a Change of Direction. King’s Fund, London.

Bell, J. (1991) Doing your Research Project. Open University Press, Milton Keynes.

Benson, P. (1994) Deinstitutionalisation and Family Caretaking of the Seriously Mentally Ill: the

Policy Context. International Journal of Law and Psychiatry, 17, (2) 199 - 138.

Blackwell, J, O'Shea, E, Moare G, Murray P. (1992) Care Provision and Cost Measurement:

Dependent Elderly People at Home and in Geriatric Hospitals. The Economic and Social Research

Institute, Dublin.

Bowling, A. (1997) The effects of illness on quality of life: Findings from a survey of households

in Great Britain. Journal of Epidemiology and Community Health, 50, 149-155.

Brody, E. M. (1990) Women in the Middle: Their parent care years. Springer, New York.

Brody, E. M. (1995) Prospects for family care giving: Response to change, continuity, and diversity,

In: Kane, R.A. and Penrod, J.D. (1995) Family Care giving in an Ageing Society: Policy

Perspectives, Sage Publications, New York.

Buck, D., Gregson, B. A., Bamford, C. H., McNamee, P., Farrow, G. N. and Bond, J. (1997)

Psychological distress among informal supporters of frail older people at home and in

institutions. International Journal of Geriatric Psychiatry, 12, 7 737 - 744.

Burnard, P., Morrison, P. (1994) Nursing Research and Action (2nd Ed) MacMillan, London.

Burns, N., Grove, S. (1987) The Practice of Nursing Research: Conduct, Critique and Utilisation:

W.B. Saunders Company, Philadelphia.

Burr, J.A. and Mutchler, J.E. (1999) Race and ethnic variations in normal or filial responsibility

among older persons. Journal of Marriage and the Family, 61 (3) 674-687.

Byers, P.Y., Wilcox, J.R. (1991) Focus groups: a qualitative opportunity for researchers. The

Journal of Business Communication 28(1), 63-78.

Caldock, K. (1994) Policy and practice, fundamental contradictions in the conceptualisation of

community care for elderly people. Health and Social Care in the Community, 2, 131-141.

107

14/05/23 04:43

Carnegie Trust, U.K. (1990) Carnegie Inquiry into the Third Age of Life. Carnegie Trust, U.K.

Central Statistics Office (1999) Population and Labour Force Projections, 2001 – 2031. Dublin

Stationery Press: Dublin.

Central Statistics Office (1997) Women in the Workforce. Statistical Release, Ireland.

Central Statistics Office (1997) Population and Labour Force Projections 1996 - 2026. Stationery

Press, Dublin.

Challis, D. (1992) Providing alternatives to long stay hospital care for frail elderly patients: is it cost

effective? International Journal of Geriatric Psychiatry 7, 773-781

Clarke, A. (1999) Focus group interviews in health-care research. Professional Nurse, 14, 6 395.

Collins, C. Jones R., (1997). Emotional Distress and Morbidity in Demential Carers: a Matched

Comparison of Husbands and Wives. International Journal of Geriatric Psychiatry 12, 1168-1173

Compton, S. A., Flanagan, P. and Gregg, W. (1997) Elder Abuse in People with Dementia in

Northern Ireland; Prevalence and Predictors in Cases Referred to a Psychiatry of Old Age Service.

International Journal of Geriatric Psychiatry, 12, 6 632 - 635.

Coope, B. B., C; Saad, K; Patel, A; Bentham, P; Bannister, C; Graham, C; and Wilcock, G. (1995)

The prevalence of depression in the carers of dementia suffers. International Journal of Geriatric

Psychiatry, 10, 237-242.

Cormack, D (1996) The Research Process in Nursing. 3rd Edition, Blackwell Scientific, Oxford.

Cronbach, L.J. (1951) Coefficient Alpha and the Internal Structure of Tests. Pychometrika, 16, 297

– 334.

Cutcliffe, J.R., McKenna, H.P. (1999) Establishing the credibility of qualitative research findings:

the plot thickens. Journal of Advanced Nursing, 30 (2) 374-380

Dello Buono, M., Busato, R., Mazzetto, M., Paccagnella, B., Aleotti, F., Sanetti, O., Bianchetti, A.,

Trabucchi, M. De Leo, D. (1999) Community Care for Patients with Alzheimer’s Disease and non-

demented elderly people: Use and satisfaction with services and unmet needs in family caregivers.

International Journal of Geriatric Psychiatric 14, 915-924.

Denzin, N., Lincoln, Y.S. (1994) Introduction: entering the field of qualitative enquiry. In

Handbook of Qualitative Research (Denzin N., Lincoln, Y.S. Ed’s) Sage, London.

Department of Health, U. (1989) Caring for People: Community Care in the next decade and

beyond. HMSO. London.

Department of Health, (1993) Research for Health. HMSO. London.

Department of Health (1994) Shaping a Healthier Future: A Strategy for Effective Healthcare in the

1990's. Stationery Press: Dublin.

108

14/05/23 04:43

Department of Health (1995) Carers’ Recognition and Service Act. Practice Guide, Department of

Health, London.

Department of Health (1997) An Action Programme for the Millennium. Stationery Office, Dublin.

Department of Health and Children (1998) Working for Health and Well-being Strategy Statement

1998-2001. Department of Health and Children, Dublin.

Department of Social, Community and Family Affairs (1998) Inclusion, Innovation and

Partnership. Strategy Statement 1998 – 2001, Department of Social, Community and Family

Affairs, Dublin.

Department of Health (1999) Carers National Strategy, Department of Health, London.

DHSS (1996) The Prevalence and Experience of Informal Caring within the Eastern Health and

Social Services Council Area. Eastern Health and Social Services Council, UK.

Doornbos, M. M. (1996) The Strengths of Families Coping with Serious Mental Illness. Archives of

Psychiatric Nursing, 4, 214-220.

Edmondson, R. (1997) Older people and Life Course Construction in Ireland. In Cleary, A. and

Eurobarometer (1993) Age and Attitudes: Main Results of a Eurobarometer Survey, Director

General 5, European Commission, Brussels.

Eurostat (1993) Demographic Statistics, Statistical Office of the European Communities,

Luxembourg.

Evers, A. (1995) The Future of Elderly Care in Europe: Limits and Aspirations. In: Scharf T.,

Wenger GC. Eds. International Perspectives on Community Care for Older People. Avebury,

Aldershot.

Fahey, T. (1995) Health and Social Care Implications of Population Ageing in Ireland 1991 - 2011.

National Council for the Elderly, Dublin.

Fahey, T., Murray, P. (1994) Health and Autonomy among the over 65's in Ireland. National

Council for the Elderly. Report No. 39. National Council for the Elderly: Dublin.

Finch, J. and Mason, J. (1993) Negotiating Family Responsibilities. Routledge, London.

Fowler, F.J., (1993) Survey Research Methods (2nd Ed) Sage, Newbury Park.

Gafstrom, M. and Winblad, B. (1995) Family burden in the care of the demented and nondemented

elderly: A longitudinal study. Alzheimer’s Disease Association Disorder 2, 78 - 86.

Gaucher, E. J. and Coffey, R. J. (1993) Total Quality in Healthcare: From Theory to Practice. Josse

Bass, San Francisco.

George, L. K. (1994) Caregivers burden and well being: An elusive distinction. The Gerontologist,

34, 1 6-7.

109

14/05/23 04:43

Giddens, A. (1998) Sociology. Polity Press, Cambridge.

Gilhooly, M.M.L., McKee, K.S., Whittick, J.E., Ballinger, B.B., Gordon, D.S., Mutch, W.J. and

Philp, I. (1994) Coping in family supporters of elderly people with dementia. Paper presented at

the British Society of Gerontology Annual Conference, September, Royal Holloway.

Glendinning, D. (1988) Formal Services and Informal Help: The Costs and Benefits of Informal

Careers. SPRU Discussion Paper, New York.

Goodman, C. (1986) Research on the Informal Carer: A Selected Literature Review. Journal of

Advanced Nursing 11:765-712.

Goodwin, S. (1997) Comparative Mental Health Policy: From Institutional to Community Care.

Sage Publications, California.

Graham, C., Ballard, C., Sham, P. (1997). Carers' knowledge of dementia, their coping strategies

and morbidity. International Journal of Geriatric Psychiatry 12, 931 - 936.

Gray-Vickery (1993) Gerontological Research: Use and Application of Focus Groups. Journal of

Gerontological Nursing, 19, 5 21 - 27.

Gubrium, J. (1995) taking Stock. Qualitative Health Research, 5, 3 267 - 269.

Harding, T. (1997) A life worth living: the independence and inclusion of older people. Help the

aged, London.

Harvarth, T. A. and Archbold Stewart, B. J. (1994) Establishing Partnerships with Family

Caregivers: Local and Cosmopolitan Knowledge. Journal of Gerontological Nursing, 20, 29 - 35.

Hasselkus, B. R. (1998) Meaning in family care giving: perspectives on caregiver/progressive

relationships. The Gerontologist, 28, 686 - 691.

Henwood, M. (1998) Ignored and Invisible? Carers’ Experience of the NHS Report of a UK

Research Survey. Carers National Association, London.

Ironside, J., McMahon, M., Barron, B. (1997) The Balance of Care. A study of carers needs in Co.

Clare, Ireland. Soroptomist International, Unpublished, Republic of Ireland.

Jennings, S., Sayers, G., Doorley, P. and Deehan, A. (1997) Carers of the Elderly, Knowledge, Use

or and Satisfaction with Daycare Services. Irish Journal of Medical Science, 166, 1 28 - 31.

Kane, R. A. and Penrod, J. D. (1995) Family Care giving Policies: Insights from an Intensive

Longitudinal Study, In S.H. Zarit, L.I. Pearlin and Schaie K.W. Care giving systems: Informal and

formal helpers, 273 - 292.

Keady, J. and Nolan, M. (1996) Behavioural and Instrumental Stressors in Dementia (B.I.S.I.D.):

Refocusing the Assessment of Care giving Need in Dementia. Journal of Psychiatric and Mental

Health Nursing, 3, 136-172.

110

14/05/23 04:43

Keady, J., Nolan, M. (1994) The Carer led Assessment Process (CLASP): a Framework for the

Assessment of Need in Dementia Caregivers. Journal of Clinical Nursing. 3: 103-108.

Kellett (1996) Families as caregivers: the long-term aged care experience. Paper presented at the

National Geriaction Conference, Brisbane, August.

Kellett, M., Mannion, J. (1999) Meaning in Caring: Reconceptualising the nurse-family carer

relationship in community practice. Journal of Advanced Nursing, 29 (3) 697.

Kellett, U. M. (1997) The human experience of family caring in Nursing Homes. Paper presented at

the XVIth Congress of the International Association of Gerontology, Adelaide, August.

Kitzinger, J. (1994) The methodology of Focus Groups: the importance of interaction between

research participants. Sociology of Health and Illness, 16, 1 105.

Levin, E. (1997) Carers- problems, strains, and services, In: Jacob, R. and Oppenheimer, C. (eds.).

Psychiatry of the Elderly, University Press, Oxford.

Livingstone, G., Manela, M. and Katona, C. (1996) Depression and other Psychiatric Morbidity in

carers of elderly people living at home. British Medical Journal, 312, 7024 153 - 156.

Lundh, U. (1999) Family Carers: Coping strategies among family carers in Sweden. British Journal

of Nursing 8, 11, 735-746.

Maggs, C. and Lougharne, C. (1996) The Relationship Between Elderly Carers and the Older Adult

with Learning Disabilities, An Overview of the Literature. Journal of Advanced Nursing, 23, (2)

243 - 245.

Macleod Clarke, J. Maben, J. Jones, K. (1996) The use of focus group interviews in Nursing

Research; issues and challenges. Nursing Times Research 1: 2, 143-153.

McBride, R. C. (1995) An audit of Current Discharge Planning Arrangements and their

Effectiveness on Elderly Care Wards and Community Nursing Services, together with Aspects of

Client Satisfaction. Journal of Nursing Management, 3, 1 19-24.

McElwee, C.N. (1999) Centre for Social Care Research. Conceptualising families into the New

Millennium. Phd. Thesis unpublished.

McKenna H.P. (1997) Nursing Theories and Models. Routledge, London.

Miller, D.C. (1991) Guides to Methods and Techniques of Collecting Data in Library, Field and

Laboratory. Sage, Newbury Park.

Miller, B., Campbell, R.T., Farran, C.J., Kaufman, J.E., Davis, L., (1995). Race, Control, Mastery

and Caregiver Distress. Journal of Gerontology B 50, S374-S382.

Mudge, K. and Ratcliffe, I. (1995) Considering the needs of carers: a survey of their views on

services. Nursing Standard, 9, 30 29 - 31.

111

14/05/23 04:43

Myers, F. and MacDonald, C. (1996) Power to the People. Involving Users and Carers in Needs

Assessments and Care Planning-Views from the Practitioner. Health and Social Care in the

Community, 4, 2 86-95.

Nankervis, J., Schofield, H., Herrman, H. and Bloch, S. (1997) Homebased Assessment for Family

Carers: A Preventative Strategy to Identify and Meet Service Needs. International Journal of

Geriatric Psychiatry, 12, 193 – 201

National Council for Aging and Older People (1997). Aging in Ireland, Fact File 1.

National Council for the Elderly (1997) Fact Sheet 9, National Council for the Elderly, Dublin.

National Council for the Elderly (1994) Older People in Ireland: Social Problem or Human

Resource. A Submission to the National Economic and Social Forum. Report No. 37, National

Council for the Elderly, Dublin.

Newens, A. J., Forster, D. P. and Day, D. W. K. (1995) Dependency and community care in

presenile Alzheimer’s disease. British Journal of Psychiatry, 166, 777 - 782.

Nolan, M.R. and Grant. G. (1989) Addressing the Needs of Informal Carers: A Neglected Area

of Nursing Practice. Journal of advanced nursing 14 (11) 950-61.

Nolan, M. and Grant, G. (1992). Regular Respite: An Evaluation of a hospital rota bed scheme

for elderly people. Age Concern Institute of Gerontology, Research Paper No. 6, London.

Nolan, M. & Behi. R. (1995) Triangulation: the best of all worlds? British Journal of Nursing

14(14), 829-832.

Nolan, M., Keady, J., and Grant, J. (1995) A basis for assessment and support with family carers.

British Journal of Nursing 4 (14) 822-826.

Nolan, M. and Caldock, K. (1995b) Assessment: Identifying the Barriers to Good Practice.

Health Social Care in the Community, 4, 2 77 - 85.

Nolan, M., Grant, G. and Keady, J. (1996) Understanding Family Care: A Multidimensional

Model of Caring and Coping. Open University Press: Buckingham.

Norman, I.J., Redfern, S.J., Greengrass, S. (1997) Mental Health Care for Elderly People.

Churchill Livingstone: New York

Norusis, M.J. (1985) SPSSX Advanced Statistics Guide, McGraw Hill, New York.

O'Connor, J., Smyth, E. and Whelan, B. (1988) Caring for the Elderly. Part 1: A Study of

Carers at Home and in the Community. National Council for the Aged. Report Number 18.

Dublin: National Council for the Aged.

Central Statistics Office (1996) Population and Labour Force Projections 1996 - 2026. Dublin:

Stationery Press

112

14/05/23 04:43

Pacolet, J., Bouten, R., Lanoye, H. and Versieck, K. (1999) Social Protection for Dependency in

Old Age in the 15 EU Member States and Norway. Office for Official Publications of the European

Communites, Luxembourg.

Parahoo, K. (1994) Questionnaires: use, value and limitations. Nurse Researcher 1 (2) 4-15

Parahoo, K. (1997) Nursing research: Principles, process and issues. MacMillan, London.

Parker, G. (1997) Coping with Caring for a Person with Dementia. In: (Ed) Hunter, S. Dementia,

Challenges and New Directions. Jessica Kingsley Publishers, London.

Pender, N.J. (1996). In: Health Promotion in Nursing Practice, 3rd ed. Appleton and Lange,

Stamford, CT.

Perry, J. (1995) A study of women care giving to husbands who have Alzheimer’s Disease: Family

know-how as a process of interpretative caring. Unpublished doctoral dissertation, University of

Washington.

Philp, I., McKee, J. J., Meldrum, P., Ballinger, R., Gilhooley, M. L., Gordon, D. S., Mutch, W. J.

and Whittick, J. G. (1995) Community care for demented and non-demented elderly people: a

comparison study of financial burden, service use and unmet needs in family supporters. British

Medical Journal, 310, 6993 1503 - 1506.

Polit, D.F., Hungler, B.P. (1991) Nursing Research. 6th Edition, Lippincott, Philadelphia.

Poulton, B. (1997) Consumer feedback and determining satisfaction with services. Achieving

Quality in Community Health Care Nursing Services, Macmillan Press, London.

Roberts, P. (1997) Planning and running a focus group. Nurse Researcher. Qualitative data

analysis 4 (4) 79, Royal College of Nursing, Middlesex.

Robinson, N. (1999) The use of focus group methodology - with selected examples from sexual

health research. Journal of Advanced Nursing 29 (4), 905 - 913

Richardson, A. (1992) A ten Point Plan for Meeting Carers Needs. World Health Organisation, 44,

235 – 239, Geneva.

Richardson, A. (1994) Piloting a study. In Buckeldee, J. and McMahon, R. (eds.) The Research

Experience in Nursing. Chapman and Hall, London.

Ritchie, J. and Spencer, L. (1994) Qualitative data analysis for applied policy research. In: Bryman

A., and Burgess R. Analysing Qualitative Data. Routledge, London.

Robertson-Malt, Susie (1999) Listening to them and reading me: a hermeneutic approach to

understanding the experience of illness. Journal of Advanced Nursing, 29 (2) 290 – 297.

113

14/05/23 04:43

Rose, L. E. (1996) Families of Psychiatric Patients: a critical review and future research directions.

Archives of Psychiatric Nursing, 2, 67 - 76.

Royal Commission on Long Term Care (1999) With Respect to Old Age: Long Term Care – Rights

and Responsibilities, Stationery Office. London.

Ruddle H., O'Donoghue, F. and Mulvihill, R. (1997) The Years Ahead Report; A Review of the

Implementation of Its Recommendations. National Council on Ageing and Older People: Dublin.

Ruddle, H., O'Connor, J. (1994) Caring without Limits? Suffers of Dementia / Alzheimer’s Disease:

A study of their Carers. The Alzheimer's Society of Ireland and Policy Research Centre, Dublin.

Salvage, A. V. (1995) Who will Care? Future Prospects for Family Care of Older People in the

European Union. European Foundation for the Improvement of Living and Working Conditions,

Dublin.

Sandleowski, M. (1991) Telling stories: narrative approaches in qualitative research. Journal of

Nursing Scholarship, 3, 23 161 - 166.

Savorani, G., Vulcano, V., Boni, S., Sarte, G., Ravaglia, G. (1998) Archives of Gerontology and

Geriatrics. 5, 6 1.

Sheehan, J (1996) Aspects of research methodology. Nurse Education Today 6, 193-202.

Sinclair, H. (1999) The application of small area analysis in the planning and provision of primary

and secondary care services. Conference proceedings. Health Service research conference.

Unpublished work, University College Cork.

Sisk, R.J. (2000) Caregiver Burden and Health Promotion. International Journal of Nursing Studies

37 (2000) 37-43.

Sternberg, R.G. (1993) The Psychologists Companion (3rd Ed) Cambridge University Press, New

York.

Stewart, D. W., Shamdasani P.N., (1990) Focus groups: Theory and Practice. Sage, Newbury Park.

Stevens, G,L, Walsh, R.A., Baldwin, B.A., 1993. Family Caregivers of Institutionalised and Non-

Institutionalised Elderly Individuals. Nursing Clinics of North America, 28 349 – 362, New York.

Sundstrom, G. (1994) Care by Families; An overview of trends, in caring for frail elderly people.

New Directions in Care, OECD Paris.

Swanwick, G.R.J., Lawlor, B.A. (1998) Services for Dementia sufferers and their carers:

Implications for future development, in: Leahy, A.L., Wiley, M.M. (Eds.) The Irish Healthcare

System in the 21st Century, Oak Tree Press, Dublin.

Syron, M., Keane, Y. (1995) A study of the informal carers in the Ballyconnealy area. Milupa

Education and Research Review 1 (18) 4-7, Dublin.

114

14/05/23 04:43

The Health Forum (1994) What created health? Individuals and communities respond. A National

Study conducted by DYG inc., for the Healthcare Forum, San Francisco.

Tester, S. (1996) Community Care for Older People: A comparative Perspective. Macmillan,

Basingstoke.

Tester (1999) Commentary - Useful services for families; research findings and directors.

International Journal of Geriatric Psychiatry 14, 165-181.

Thornton, P. and Tozer, R. (1994) Involving Older People in Planning and Evaluating Community

Care: A Review of Initiatives. Social Policy Research Unit, New York.

Tilley, S., Pollack, L., Ross, L., Tait, L. (1999) Progress’s Pilgrim: A critical narrative of research in

progress. Journal of Advanced Nursing 29 (5) 221 – 227.

Twigg, J. and Atkin, M. (1994) Carers Perceived: Policy and Practice in Informal Care. Open

University Press, Buckingham.

Wackerbarth, S (2000) Caregivers of Family Members with Dementia were involved in a dynamic

decision making process to maintain tolerable situations. Evidence Based Nursing, 3, 32-33.

Walker, A. (1995) Integrating the Family in the Mixed Economy of Care. In: Allan, I., Perkins, E.

eds. The Future of Family Care for Older People. HMSO, London.

Wardell, F. and Chesson, R. (1998) Volunteering a Healthy Choice. Elderly Care. 10, (6) 12.

Warner, C., Wexler, S. (1998) Eight Hours a Day and Taken for Granted ? The Princess Royal

Trust for Carers, London.

Williams, E. I. and Fitton, F. (1991) Survey or Carers of Elderly Patients Discharge from Hospital.

British Journal of General Practice, 41, 344 105 - 108.

World Health Organisation (1993) The ICD-1 Classification of Mental and Behavioural Disorders;

Diagnostic criteria for research. World Health Organization, Geneva.

Zarit, S. H., Gaungler, J., Jarrott, S.E (1999) Useful Services for Families: Research Findings and

Directions. International Journal of Geriatric Psychiatry 14, 165-181.

Zeller, R.A. and Carmines, E.G. (1986) Measurement in the social sciences, Cambridge University

Press, Cambridge.

115

14/05/23 04:43

AppendicesAppendix 2.1: Levels of User Involvement

Empowerment

Participation

Consumer Satisfaction

Consultation

Health Education

Information Giving

Source: Poulton, B, 1997. Consumer Feedback and Determining Satisfaction with Services.

In: Achieving Quality in Community Health Care Nursing Services. Macmillan Press, London.

116

14/05/23 04:43

Appendix 3.1 Topic Guide for Focus Group Interviews

Explore of the profile, role and needs of informal carers in order to map their experience of

caring for older persons.

Discuss responsibilities for care-giving: government, health board, statutory and voluntary

services.

Explore the role of the family in the provision of home care for older people.

Discuss support services for carers;

Professional supports;

Physical structures (appliances etc);

Psychological (stress related matters);

Social (carers allowance, financial issues, respite services).

Discuss the need for education and training for carers.

Identify coping strategies employed by carers.

Explore the positive aspects of the caring role/relationship.

Discuss the effects of care provision on the carers’ health, wellbeing and quality of live.

Establish carers’ satisfaction in relation to the following indices:

1. quality of life,

2. information needs,

3. day care and respite care,

4. transport,

5. Emotional support.

117

14/05/23 04:43

Appendix 3.2: The Questionnaire

This Questionnaire is Strictly ConfidentialQuestionnaire No.

NEEDS ASSESSMENT QUESTIONNAIRE FOR CARERS OF OLDER PEOPLE (OVER 65 YEARS)

PLEASE COMPLETE EACH QUESTION BY TICKING THE APPROPRIATE BOX / BOXES OR WRITING IN THE SPACE PROVIDED.

Official Use OnlyRuralCity

1.1 Are you 1 Male 2 Female

1.2 What age are you?1 Less than 20 years2 20 – 30 years3 31 – 40 years4 41 – 50 years5 51 – 60 years6 61 – 70 years7 Over 70 years

1.3 How many people over 65 years do you care for?

1.4 Do you live in the same household asthe older person/persons you care for? 1 Yes 2 No

1.5 How long have you been a carer?

1 Up to 1 Year 4 5 years but less than 102 More than 1 year, but less than 2 5 10 years but less than 203 2 years but less than 5 6 20 years or more

118

14/05/23 04:43

Section 1 Cont’d

1.6 With regard to the older person / persons you care for, please indicate;

1st Person 2nd Person 3rd Person1.6.1 Your relationship1.6.2 Their age1.6.3 Any condition/s the person

suffers from

1.7 Does the older person / persons you care for suffer from any periods of confusion?

1 Frequently 2 Occasionally 3 Never

1.8 Do you also care for any other persons / family members who are not over 65 years?

1 Yes 2 No

If yes, please answer question 1.8 below

1.9 Please indicate the other family members or persons you care for.

1.10 Are you in paid employment?

1 Full-time 2 Part-time 3 No

1.11 If not, would you like to be in paid employment? 1 Yes 2 No

1.12 Did you give up paid employment to become a carer? 1 Yes 2 No

Please answer all relevant questions on this page

119

14/05/23 04:43

SECTION 2: CARING ACTIVITIES AND SUPPORTS

2.1 Apart from the condition that the older person / persons suffers from, what concerns you most about their health and welfare?

2.2 How many hours a day do you spend caring?

1 0 – 3 hours 2 4 – 8 hours 3 9 – 15 hours 4 16 – 24 hours

2.3 When do you provide care? Please tick as many as are appropriate;

1 Morning 2 Afternoon 3 Evening 4 Overnight

2.4 If overnight, how often do you get up?

1 1 – 3 times nightly2 4 – 6 times nightly3 More than 6 times nightly

2.5 Please state what days (Monday to Sunday) you provide care. Please tick as many as are appropriate

5.1 Monday5.2 Tuesday5.3 Wednesday5.4 Thursday5.5 Friday5.6 Saturday5.7 Sunday

Please answer all relevant questions on this page

120

14/05/23 04:43

Section 2 Cont’d

2.6 What amount of assistance does the person / persons you care for need with the following activities? Please tick one box for each caring activity

None Between 1 and 6 hours

daily

Between 7 and 12 hours

daily

Between 13 and 18 hours

daily

Between 19 and 24 hours

daily6.1 Washing & Bathing6.2 Dressing6.3 Eating & Drinking6.4 Cooking6.5 Toileting6.6 Lifting & Moving6.7 Incontinence6.8 Medication6.9 Household Tasks6.10 Shopping6.11 Personal SafetyPlease specify any other activities

2.7 Do you receive the carers allowance? 1 Yes 2 No

2.8 Do you agree with the means testing of the carers’ allowance?

1 Yes 2 No

2.9 Please specify the average number of hours per week that you receive assistance from either or both of the following people.Home helpHome care assistant

2.10 Do you feel you need assistance from either or both of the following peopleHome help 1 Yes 2 NoHome care assistant 1 Yes 2 No

Please answer all relevant questions on this page

121

14/05/23 04:43

Section 2 Cont’d

2.11 How would you describe the practical support and assistance you receive in your caring role from each of the following:

Very Good

Good Fair Poor Very Poor

Don’t expect any help

11.1 My Family11.2 Professional / Health Services11.3 Voluntary Organisations11.4 Friends / Neighbours

2.12 With regard to the following statements, please indicate your agreement / disagreement.

The people that are there to listen to me

include

The people who provide me with information and direction when I need it

include:Agree Disagree Agree Disagree

12.1 My Family12.2 Professional / Health Services12.3 Voluntary Organisations12.4 Friends / Neighbours

2.13 How would you describe your PAST and CURRENT relationship with the person / persons you care for? Tick one box in Past and Current sections.

Past Relationship Current Relationship

Person 1 Person 2 Person 3 Person 1 Person 2 Person 31 Very Good2 Good3 Fair4 Poor5 Very Poor

2.14 Do you believe that caring for the older person is primarily the responsibility of:

1 Family2 Health Board 3 Both

Please answer all relevant questions on this page

122

14/05/23 04:43

Section 2 Cont’d

2.15 Has the person you care for ever been offered ‘Respite Care’? This is where the person you care for is looked after in a Nursing Home, Hospital or a Voluntary Organisation in order to give you a break.

1 Yes 2 No

2.16 If ‘Respite Care’ has been offered but you did not avail of it, please indicate why?

2.17 How long is it since you had a break, lasting a week or more; away from your caring role?

1 Less than six months 4 Between 5 & 10 years2 Between 6 & 12 months 5 Over 10 years3 Between 1 & 5 years 6 Never

2.18 Which respite services would you benefit from it available? Please tick one or more if you so wish.

1. A couple of hours a week on a regular basis;2. Day-care facilities in the local community;3. One week respite care twice a year in a care of the elderly facility;4. Please specify any other suggestions;

2.19 Has any family member or friend looked after the person you care for in order to give you a break?

Family 1 Yes 2 No

Friend 1 Yes 2 No

Please answer all relevant questions on this page

123

14/05/23 04:43

Section 2 Cont’d

2.20 Are you aware of any Day-care Services that are available to the person you care for?

1 Yes 2 No

2.21 Does the person you care for avail of Day-care Services?

1 Yes 2 No

If not, why?

2.22 Do you experience transport problems in accessing services to support you in your caring role?

1 Yes 2 No 3 Transport provided by family / self

2.23 Do you receive enough information about services available to support you in your role as a carer?

1 Yes 2 No

2.24 Do you receive the information you require from any one or more of the following? Please tick all that are applicable.

1 Family Doctor 6 Family7

2 Public Health Nurse 7 Friends / Neighbours3 Community Psychiatric Nurse 8 Radio4 Voluntary Organisations 9 Television

87

5 Books, Newspapers & Magazines 10 Internet / Computer

2.25 Please specify which Voluntary Organisations, if any provide support for you as a carer.

Please answer all relevant questions on this page

124

14/05/23 04:43

Section 2 Cont’d

2.26 Please indicate how often per month the person you care for sees any of the following Health Board Professionals in the home or at a clinic.

Once Monthly

Once every 2-6 months

Only when asked / needed

Never

26.1 Public Health Nurse26.2 Community Psychiatric Nurse26.3 Occupational Therapist26.4 Physiotherapist26.5 Social Worker26.6 Family Doctor26.7 Counsellor26.8 Chiropodist

2.27 Please specify which professionals, if any, from the above list (in question 2.26) have provided the most valuable contribution/s to you as a carer.

2.28 Would you like more support from any of the professionals listed in question 2.26.

1 Yes 2 No

If yes, please answer question 2.29.

2.29 Which professionals would you like more support and advise from?

Please answer all relevant questions on this page

125

14/05/23 04:43

Section 2 Cont’d

2.30 In your experience do the professionals you meet understand your health and social care needs, as a carer?

1 Yes 2 No

Please elaborate if you so wish.

2.31 Do you feel the Department of Health should do more for the carers of older people

1 Yes 2 No

Please answer all relevant questions on this page

126

14/05/23 04:43

SECTION 3: COPING STRATEGIES, NEGATIVE AND POSITIVE DIMENSIONS

Please indicate how much you agree or disagree with the following statements by ticking one column for each statement.

Strongly Agree

Agree Neither agree nor disagree

Disagree Strongly Disagree

3.1 I feel trapped in my care giving role3.2 I rely on past experiences to help me

cope3.3 I feel isolated from others as a carer3.4 I seem to have no free time for

myself3.5 Caring makes me feel needed and

fulfilled3.6 I feel sad and lonely at times3.7 I feel content in my role as a carer3.8 I sometimes lose my temper with the

person I care for3.9 I cope better when I reflect on good

times I had in the past with the person I care for

3.10 I worry about becoming unwell and unable to continue as a carer

3.11 Emotionally, I feel supported3.12 Sometimes I resent the person I care

for3.13 The good parts of caring help me to

cope 3.14 I feel burdened by my roles and

responsibilities as a carer3.15 I lose my patience with the person I

care for regularly.3.16 If I had more information and

training for this role I feel I could cope better

3.17 I need someone to discuss my problems as a carer, in order to cope

3.18 There are times when I feel I could lose control

3.19 Caring has strengthened family relationships

3.20 I feel powerless as a carerPlease answer all relevant questions on this page

127

SECTION 4: QUALITY OF LIFE ISSUES

4.1 How would you describe your own physical health?

Very Good

Good Fair Poor Very Poor

1 Before becoming a carer2 Since becoming a carer

4.2 How would you describe how you feel emotionally within yourself?

Very Good

Good Fair Poor Very Poor

1 Before becoming a carer2 Since becoming a carer

4.3 Do you worry about your own health? At Present In the Future1 Yes 1 Yes2 No 2 No

4.4 Do you feel you usually have the energy to fulfil your role as a carer?

1 Yes 2 No

4.5 Do you usually get enough sleep to meet your own needs?

1 Yes 2 No

4.6 Do you find life satisfying?

1 Yes 2 No

4.7 Do you feel cared for yourself as a person?

1 Yes 2 No

4.8 Do you feel that your religious / spiritual beliefs help you to cope with your caring role?

1 Yes 2 No 3 Not Applicable

Please answer all relevant questions on this page

129

Section 4 Cont’d

4.9 Has your social life deteriorated since becoming a carer?

1 Yes 2 No

4.10 Do you experience financial worries that result from providing home care?

1 Yes 2 No

4.11 If you have given up paid employment to become a carer, do you experience concerns about your own pension?

1 Yes 2 No 3 Not Applicable

4.12 If there are any comments / recommendations that you wish to make regarding any aspect of providing care for older people, please do so in the space provided below.

4.13 Please indicate if you would be willing to take part in a discussion with the research officer regarding your views in relation to your caring role?

1 Yes 2 No

If yes, please provide your:

Name:

Address:

Phone:

Thank you most sincerely for taking the time to complete this questionnaire.

130

131

Appendix 3.3

PHN Area and Percentage of Older People, Over 65 Years in Waterford Community Care Area.

Public Health Nurse Area 1991 Pop. 1996 Pop. % change 65 – 74 Years

75 – 84 Years

85+ Years

1. Newtown 4717 5275 11.8% 6.39% 5.18% 1.97%

2. Johns Park 4497 4409 1.9% 11.15% 5.03% 1.31%

3. Kilcohan, 2058 3235 57.2% 1.95% 0.96% 0.48%

4. Ballybeg 3573 3307 7.4% 1.2% 0.4% 0.1%

5. Larchville, Lisduggan 5836 4962 14.9% 8.05% 4.16% 1.43%

6. Slievekeale, Lismore Park 5158 5180 0.4% 3.54% 1.95% 0.64%

7. Hillview 4448 4631 4.1% 10.27% 5.07% 1.16%

8. City Centre 4257 4441 4.3% 11.50% 5.23% 1.33%

9. Ardmore 2850 2879 1% 7.96% 5.6% 1.14%

10. Bonmahon 3073 3185 3.6% 8.10% 5.04% 0.84%

11. Lismore 2567 2550 0.7% 8.35% 6.15% 1.65%

12. Cappoquin 2802 2795 0.2% 8.84% 5.72% 1.11%

13. Dungarvan 3590 4665 29.9% 6.39% 3.59% 0.56%

14. Dungarvan 3688 4160 12.8% 9.32% 3.42% 1.80%

15. Kilmacthomas 2977 2885 3.1% 7.80% 3.33% 0.63%

16. Kilmeaden 3224 2983 8.1% 5.47% 2.43% 0.90%

17. Mooncoin 3654 3602 1.4% 7.36% 3.50% 0.64%

18. Piltown 3621 3613 0.2% 6.92% 4.29% 1.05%

19. Portlaw 1968 2161 9.8% 7.69% 5.18% 1.39%

20. Ring (Old Parish) 2924 2695 7.9% 6.39% 2.40% 0.93%

21. Slieverue 3990 3837+ 3.8% 10.42% 6.40% 1.02%

22. Seskinane 2748 2358 14.2% 7.63% 5.40% 1.14%

23. Tallow 2894 2787 3.7% 8.70% 5.23% 0.84%

24. Tramore 1 (Pilot Site) 3536 4951 40% 6.84% 3.14% 0.62%

25. Tramore 2 3449 2864 16.9% 6.22% 2.35% 0.50%

26. Dunmore East 3673 4167 13.4% 7.27% 3.26% 0.62%

28. Ferrybank 4144 4839- 16.8% 8.01% 4.65% 0.76%

29. Dunmore Road 3383 4736 40% 2.35% 0.89% 0.06%

132

Appendix 3.4 Pilot Study: Analysis of Response Rates

Test (N =35)

Respondent Number Distribution Method Total response rate 88%

Respondents 1-11 Face-to-face (n=11) 100%

Respondents 12-26 Public Health Nurse (n=15) 100%

Respondents 27-40 Postal (n=9 out of 14) 64%

Re-Test (N =28)

Respondent Number Distribution Method Total response rate 71%

Respondents 1-11 Face-to-face (n=11) 100%

Respondents 12-26 Public Health Nurse (n=12) 82%

Respondents 27-40 Postal (n=5) 32%

133

Appendix 3.5 Personalised Letter Accompanying Questionnaire

22nd November 1999

Dear

The South Eastern Health Board in association with Waterford Institute of Technology and the University of Ulster have set up a working group aimed at assessing the needs and experiences of carers of older people.

In order to identify these needs, we are carrying out a survey of people involved in the care of an older person. Your name was selected at random from Health Board records to take part in the study.

In an effort to hear and understand your experiences, as a carer, I would be grateful if you would complete the enclosed questionnaire by 15th December 1999. While I fully appreciate the demands on your time, this is an opportunity to have your voice heard. Although, the questionnaire is quite lengthy, your involvement is crucial to developing a clear understanding of important issues. The information you provide will be treated as strictly confidential. No-one other than the Research Team will have access to the completed questionnaires.

Please feel free to address any questions on any part of the questionnaire that seem unclear. I can be contacted at the number below if you require assistance. I have assigned Mondays and Tuesdays from 9.00am to 5.00pm to addressing any queries you may have. However, you may call the number below at any time and I will speak with you as soon as possible.

Your time and co-operation in completing this questionnaire is sincerely appreciated.

Yours sincerely,

__________________________

Paula LaneResearch Officer

Phone: (051) 302803E-Mail: Plane@wit.ie

134

Appendix 3.6 Letter to PHN’S/CPN’S, Accompanying Prevalence Register

15th July 1999

Ms. Community Care CentreCork RoadWaterford

Dear

The South Eastern Health Board in association with Waterford Institute of Technology and the University of Ulster are currently undertaking a study aimed at identifying the needs and experiences of family and lay carers of people over 65 years of age. This study will also include mentally infirm persons in home care settings in both urban and rural areas of the Waterford Community Care Region.

In order to estimate the prevalence of informal caring, I would appreciate if you would provide me with information regarding the number of carers providing all levels of care for an older person. The specific data required includes the carers’ name, address, and age category. Please specify the Barthel Index or Mental Test Score of the persons being cared for by each informal carer. Please indicate if the person being cared for is known to be on the at risk register.

There may be more than one carer involved in providing care for an individual older person. All these carers are relevant, irrespective of the amount of time spent providing care.

Please do not hesitate to contact me at the address or phone number provided if you have any queries. I would be grateful if I may have this information before 9 th August 1999. While I appreciate the immense constraints on your time, this important information must be detailed in order to examine support services for carers and older people. Your time and co-operation is sincerely appreciated.

Yours sincerely

_________________________Paula LaneResearch Officer

135

Appendix 3.7 Prevalence Register: Data Collection FormIn order to assist you in providing this data, I would be grateful if you would follow the format below, in relation to all family / lay carers of older people (>65 years) in your area.

Carers Name Address Phone Care Recipient Barthel

Index

At Risk

Register1

2

3

4

5

6

7

8

9

10

11

12

13

14

136

Appendix 3.8

Letter Administered to Public Health/Community Psychiatric Nurses Prior to Conducting the Main Study

Dear

As you know, the South Eastern Health Board in association with Waterford Institute of Technology and the University of Ulster are currently undertaking a study aimed at identifying the needs and experiences of family / informal carers of people over 65 years of age. This study will also include mentally infirm persons in home care settings in both urban and rural areas of the Waterford Community Care Region.

Thank you for submitting details in relation to carers known to you in your area. A register of informal / family carers has now been set up on a database. Carers have been randomly selected from this database, to partake in the main study. The Steering Group for the project have proposed that each Public Health Nurse / Community Psychiatric Nurse will distribute and collect the questionnaire for the purposes of the main study. Your co-operation and contribution is therefore very important, as you are aware, a good response rate is essential in order to adequately reflect the views of carers.

Please do not hesitate to contact me at the address or phone number provided if you have any queries. I will be available from 9.00am to 5.00pm each Monday and Tuesday on the number below. However, please feel free to contact me on any other weekday and I will return your call as soon as possible. I would be grateful if you would return the completed questionnaire by 10 th

December 1999. While I appreciate the immense constraints on your time, your support is central to researching in this area of health and social care.

Yours sincerely

_________________________Paula LaneResearch OfficerWaterford Institute of TechnologyCollege Street Campus

Phone: (051) 302803 Fax: (051) 302293 E-Mail: plane@wit.ie

137

Appendix 3.9: Profile of Non-Respondents in Main Study

Relevant Details Respondent Number

Moved out of study site – only known after closing date of study 164, 200

Refused – Says she / he is not a carer 304, 216, 85, 66, 60

255, 203, 170, 145

177, 118

Care recipient objected, says she / he has no carer 137, 235, 75, 53

Refused – no reason given 160, 206, 308, 213

113, 92, 230, 305

240, 244, 37, 273

Carer feels too stressed to partake 236, 247, 93, 14, 281,

140, 78, 125, 247, 93,

14, 281, 140, 78, 244,

175

Sampling error – age did not meet inclusion criteria 263, 212, 48, 114,

248, 65

Carer ill – hospitalised 49

Refused – too upset following recent death 169

Refused – not interested in partaking 204

Too busy to partake 179, 251

Refused – says there is no point 260, 191

138

Appendix 3.10 Audit Trail For In-Depth Interviews

Literature Review Main Study – Questionnaire Data

Emergent Subject Guide for in-depth Interviews

1 Responsibilities for care giving: varying perspectives in relation to DOH / Government responsibilities.Salvage; 1995;Wardell et al; 1997;Pacelot; 1998;Dello Buono; 1999.

Items 2.14, 2.30, 2.31 Carers perceived responsibilities: Government; Health Board; Other Statutory Bodies.

2 Family dynamics – the impact upon carers’ roles and responsibilities. DOH, 1989, 1994, 1997.Twig & Atkin; 1994;Ruddle & O’Connor; 1994;Levin; 1997.

Items 2.11, 2.12, 2.19 The role of the family in care giving

3 The importance of support service planning & interventions.Martin & White, 1988;Thompson; 1993;Alexy & Elnitsky; 1996;Cooper, 1997;Nankervis et al; 1997;Riordan & Bennett; 1998;Vetter et al; 1998;Dello Buono; 1999.

Items 2.7, 2.9, 2.11 – 2.12, 2.15 – 2.16, 2.18 – 2.31

Support services for carers; Physical Psychosocial Dimensions

4 Health & stress related aspects of care giving;Navid; 1992;Kelleher; 1993;O’Loughlin; 1994;Twig & Atkin; 1994;Coope et al; 1995;Livingstone et al; 1996;Goodwin; 1997;Cullen et al; 1997;Buck et al; 1997;Brown & Mulley; 1997; (Health and Wellbeing).Donaldson et al; 1998;Zarit et al; 1999 (stress)

Item 2.13, Sections 3 & 4

Caring – the effects on carers’ health, wellbeing and quality of life.

5 Education & training requirements for carers.Erkert; 1991;Blackwell et al; 1992;Poulton; 1997;Wardell & Chesson; 1998;Savorani et al; 1998.

Section 3,Items 4.1 – 4.3, 4.10, 2.26, 2.11

Education and Training for Carers.

139

Appendix 3.11 Proposed Interview Topic Guide

*Please tick the boxes where you consider the topic to be relevant.

Relevant Irrelevant

1. Responsibilities for care giving; Government, Health Board and Statutory Services;

2. The role of the family;

3. Support services for carers; Professional Supports; Physical structures (appliances etc); Psychological (stress related matters); Social (Carers allowance, financial issues, respite services)

4. Caring – the effects on the carers health and wellbeing;Quality of life.

5. Education and training for carers.

Any other suggested topics for discussion:

Please specify date and time available to meet with Researcher

Date: _________________________

Time: _________________________

Please do not hesitate to contact me at the number below if you have any queries.

Phone: (051) 302803Fax: (051) 302293

140

Appendix 3.12 Information Letter for In-Depth Interview Participants

Title of research project:

The Needs and Experiences of Family or Lay Carers of Older People

Explanation

Thank you for completing the questionnaire and indicating your willingness to take further part in this research project. Your contribution to this research is very valuable and much appreciated.

. As you may recall, the project is about exploring the health and social care needs of people who provide varying amounts of care for an older person living at home. Research in other countries has shown that caring for an elderly family member can at times be difficult and at other times rewarding. However, there is little research done on this in Ireland.

Therefore, the purpose of meeting with you is to gain greater understanding of the experiences and needs of caring from the carers' point of view. This will provide information that may contribute to future health service plans to support carers in the South East. The interview should last about 45 minutes.

I am based at the Waterford Institute of Technology and this work is in association with the South Eastern Health Board and the University of Ulster. The highest standards of professional and ethical practice shall be adhered to at all times. All the information you provide will be treated in the strictest confidence. The anonymity of all who take part will also be protected. You can of course withdraw from the study at any time.

Your participation is sincerely valued and very much appreciated. If you have any queries, please do not hesitate to contact the researcher.

Yours sincerely

_____________________

Paula LaneResearch OfficerPhone: (051) 302803E-mail: plane@wit.ie

141

Appendix 3.13 Consent Form

Title of Project:

The needs and experiences of family and lay carers of older people

I, ……………………………………………………..

of ……………………………………………………………………………………………

………………………………………………………………………………………………

have read and understood the “Information for Participants” sheet which describes the research project, a copy of which I have been given to keep. I have been given ample time to decide whether or not I wish to take part.

I willingly declare my consent to participate in this study.

Signed:

(Participant) ………………………………………………………………………………

(Researcher) ………………………………………………………………………………

Date …………………………………………

142

Appendix 3.14 Ethical Approval for the Study

Advancing Knowledge through Teaching, Learning and ResearchCampuses: Belfast, Coleraine, Jordanstown, Magee College

Advancing Knowledge through Teaching, Learning and ResearchCampuses: Belfast, Coleraine, Jordanstown, Magee College

Newtownabbey

County Antrim

BT37 0QB

Northern Ireland

Telephone: Belfast (01232) 365131

7th October 1999

Ms. Paula LaneResearch OfficeWITWATERFORDIreland

Dear Paula

Research Ethical Committee

Project 99/43 The needs and experiences of family or lay carers of older people

Thank you for the additional materials provided for the Committee.

You may now proceed with the project.

Yours sincerely

Advancing Knowledge through Teaching, Learning and ResearchCampuses: Belfast, Coleraine, Jordanstown, Magee College

Advancing Knowledge through Teaching, Learning and ResearchCampuses: Belfast, Coleraine, Jordanstown, Magee College

NICK CURRYResearch Office

Advancing Knowledge through Teaching, Learning and ResearchCampuses: Belfast, Coleraine, Jordanstown, Magee College

Appendix 3.15 Extract From In-Depth Interview

R…..in the beginning it was all new to me, I had to find out what was happening to my mother.

I just went ballistic, I didn’t know what was happening and now I have become accustomed to it

and I know her needs and em, I came the long hard road learning myself ….. (p. 5)

I. Was that difficult.

R. Oh it was yeah, because I had to give up my job then as well and you know she was, it gradually

took about, it was happening over a period of three years and she got really bad, so I, it was all new

to me and I was, had to get accustomed to this and I did then slowly but now I know where I stand

with it and you know, I came the, it just didn’t happen overnight, my, with my mother it, slow,

week by week she was deteriorating and so I was learning as well and….

I. You said there, you had to give up your job.

R. Yeah, yeah, eventually.

I. How did it, how did it come to be that you were the one do you think, you know.

R. Looking after her.

I. Yeah, you know how some…

R. Well, I am the youngest in the family, the three others are married.

I. Right, OK.

R. And em, I was here with my mother anyway, living with my mother, my father died when I

was twenty, so em, like I had been with her, like we had been together then for a few years just

in the house, so, like the rest were married and they have children and…

148

do you mind telling me, say about the experience, of what it was like for you, you know, when in

the beginning when you found yourself in the role and your mother became iller over that

timeframe. Like you say it was gradual, but…

R. Yeah, em, gradual, I went.

I. But how you felt yourself.

R. I was totally, I just couldn’t em, it was very hard she was doing things that, yet you think that

she was normal and you would come home and you would find em, she could be walking the

roads or she could be, the doors could be left open. She would get up at night, em, leaving things

in funny places, doing funny…

I. Not herself.

R. Not herself, yeah, em, couldn’t communicate with her and she would totally go against you and

there was a stage in the beginning which was very hard where she wouldn’t leave you wash her, she

had some, you know, she wouldn’t leave you touch her, so you know that was a battle to get her

into the bath and wash her and all, you know, so I started to overcome that and then her bowels

started to deteriorate and her, she got constipated and she still had some faculties, but you couldn’t

tell her to go to the toilet and then to the bathroom, she wouldn’t go, she would soil herself and that

was the first two years were just, I nearly had a breakdown, now I will be honest with you and I

could show you photographs of myself, I was a total wreck, trying to come to terms with it and she

would be going against you, because she had some bit of a mind then, but em, her whole system

was breaking down and mine was breaking down on top of it, so, yet you have to do it. The first

stages were absolutely just terrible, I just wouldn’t wish it on anybody now, em, oh, I broke down, I

mean I just broke down, I mean I used to have breakdowns, I would just cry, you know yourself…

I. Yeah.

R. And you would even turn against them, you would even, that’s how bad it can be, you know.

I. It affects your relationship with the person.

149

R. Oh totally, totally, but that’s part of you know, I was able to, there is one very good friend I

have and she em, was going through similar stages and my other sister, X, she is a Nurse and she

was actually helping me out, her husbands’ father an elderly person there and she was going

through a little bit of the same stages, she was telling me, you know but, she would look after my

mother, her own mother as well, but we were able to relate, you know and she knew I had it

very, very hard here, so em, it was bad, it was absolutely, I will never, ever forget it. It was very

bad, my whole system just broke down…

150

Appendix 5.1: Social Isolation and Loneliness Factor-Frequency of Constituent Variables

Description Frequency Valid Percent Cumulative PercentI feel trapped in my care giving roleStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

4159385514

19.828.518.426.66.8

19.848.366.793.2100

Total 207 100I feel isolated from others as a carer

Strongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

2861267514

13.729.912.736.86.9

13.743.656.493.1100

Total 204 100I seem to have no free time for myself

Strongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

436129648.0

21.029.814.131.23.9

21.050.764.996.1100

Total 205 100I feel sad and lonely at times

Strongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

4172324612

20.235.515.822.75.7

20.255.771.494.1100

Total 205 100I worry about becoming unwell and being unable to continue as a carerStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

558324347.0

27.140.911.816.73.4

27.168.079.896.6100

Total 203 100I feel burdened by my roles and responsibilities as a carerStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

2465366513

11.832.017.732.06.4

11.843.861.693.6100

Total 203 100I feel powerless as a carerStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

2342407916

11.521.020.039.58.0

11.532.552.592.0100

Total 200 100151

Appendix 5.2: Self-Fulfilment Factor-Frequency of Constituent Variables

Description Frequency Valid Percent Cumulative PercentCaring makes me feel needed and fulfilledStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

278556289.0

13.241.529.313.74.4

13.254.682.095.6100

Total 205 100I cope better when I reflect on good times I had in the past with the person I care forStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

2811238223

13.855.218.710.81.5

13.869.087.798.5100

Total 205 100The good parts of caring help me to copeStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

2212933137

10.863.216.26.43.4

10.874.090.296.6100

Total 204 100Caring has strengthened family relationshipsStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

1579434221

7.539.521.521.010.5

7.547.068.589.5100.0

Total 200 100

152

Appendix 5.3: Loss of Control Factor-Frequency of Constituent Variables

Description Frequency Valid Percent Cumulative PercentI sometimes lose my temper with the person I care forStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

1569187625

7.434.08.937.412.3

7.441.450.287.2100

Total 203 100Sometimes I resent the person I care forStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

1241179536

6.020.48.547.317.9

6.026.434.882.1100

Total 201 100I lose my patience with the person I care for regularlyStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

82834

10327

4.014.017.051.513.5

4.018.035.086.5100

Total 200 100There are times when I feel I could lose controlStrongly AgreeAgreeNeither agree nor disagreeDisagreeStrongly Disagree

1743289023

8.521.413.944.811.4

8.529.943.888.6100

Total 201 100

153

Appendix 5.4: Factor Loading for ‘Loss of Control’

Description of Variable Factor Loading

I sometimes lose my temper with the person I care for 0.61Sometimes I resent the person I care for 0.63I lose my patience with the person I care for regularly 0.75There are times when I feel I could lose control 0.75

Appendix 5.5: Factor Loading for Social Isolation and Loneliness

Description of Variable Factor Loading

I feel trapped in my care giving role 0.77I feel isolated from others as a carer 0.77I seem to have no free time for myself 0.76I feel sad and lonely at times 0.58I worry about becoming unwell and unable to continue as a carer 0.43I feel burdened by my roles and responsibilities as a carer 0.64I feel powerless as a carer 0.57

Appendix 5.6: Factor Loading for Self-Fulfilment

Description of Variable Factor Loading

Caring makes me feel needed and fulfilled 0.73I cope better when I reflect on good times I had in the past with the person I care for

0.55

The good parts of caring help me to cope 0.78Caring has strengthened family relationships 0.62

Appendix 5.7: Computation of Factor Scores

Scale Mean S.D. No. of Items AlphaSocial Isolation 19.12 6.25 7 0.86Loss of Control 13.58 3.6 4 0.80Self-Fulfilment 10.1 2.9 4 0.74

154